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June 2018 Chemo Starters

Kip Community Champion
Community Champion

Re: June 2018 Chemo Starters

Gosh Cdc sounds like you got a lot of answers and are making good decisions.  I woukd want to get all the surgery done now rather thsn hsve to face it at a later date.  If you need extra tummy fat therea plenty goimg spare here!

Sorry for short reply OH just brought me brekkie in bed

Kip

 

Member

Re: June 2018 Chemo Starters

Thanks for your Candour Sally. Good to hear Service is getting back to normal in the bedroom department! Gives me hope.

Kip I’m sending hugs- the weight gain issue is something apI have to deal with but bizarrely I’ve got to get as much of a tummy as possible in order to have two reasonably sized reconstructed breasts so I’m eating like a horse!

Agh., I can’t keep my eyes open. I did want to say I had a very productive meeting with my original surgeon. Without a doubt I will be going for a double mastectomy with a tummynDIEP if this is possible. She says all through my treatment she has learnt to expect the unexpected. She was very suprised to find that once she’d removed the actual tumour and then did a re-excision there were cancer cells speckled throughout the tissue directly under my nipple. Also If I kept my breasts she would always worry about how they would screen me in the future as I’m mammographicallu occult. The team compared all the screening images U/S and MRI that they took this March and even knowing where the tumours were located absolutely nothing could be seen on my mammograms. My family history also suggests there is something going on specifically on my Mum’s Mum’s side even though I am not BRCa or PALB. Also having a tumour over 5cn is considered large and also bilateral status adds another element of uncertainty. I have micromets in Sentinal Node so even though this is considered node negative it does show so signs of spread however small. If I risked not having more surgery now I might end up needing more surgeries if I have problems in the future. I’d rather get it all out of the way now. I’m still considering the Marsden. I got a very polite letter from the consultant I saw. May be he was just having a very bad day! Turns out my sister’s friend knows the lead consultant there very well and has talked to her about my case. Waiting to see what she thinks. My surgeon said I need to go where I feel most comfortable and even she admitted the hospital I’d have the DIEP surgery has a lot of problems! I get the impression she doesn’t particularly like working there. I read up on the plastic surgeons and one seems to have only been doing the procedure for a year. I’d prefer someone more experienced. Still trying to get my head around the options.

I really do need to get so,e sleep so will write more tomorrow. Take care everyone xxx
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Re: June 2018 Chemo Starters

So much to catch up on.  

Georgie Gee glad you’re feeling more reassured abou the rads.  I think the oncologists made a good Call with regards to ending chemo- the infections sounded horrendous and so dangerous.   Inreally don’t think you got off lightly at all!  All those hospital admissions!  Hopefully the rest of your treatment goes more smoothly.

Great you are home now. Take Care xx

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Re: June 2018 Chemo Starters

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Re: June 2018 Chemo Starters

Hoping to reply to everyone tomorrow- had five appointments over the last 3 days and I’m feeling exhausted.
This was just shared by BCC on my Facebook feed so we’re obvuously not alone!
Kip Community Champion
Community Champion

Re: June 2018 Chemo Starters

Yes I've been given some very large dressings to use if it leaks.

KTK - I am hoping to start Rads fairly soon, they were hoping to get them done before Christmas.   I guess that depends on how many I have (they have mentioned 3 weeks) and how long they take to get sorted.  I presume there are some kind of guidelines as to how long you should wait between chemo and rads?  Until I see ONC next week for results I won't know anything much.  Lots of questionsn at the ready. 

Kip

xx

Member

Re: June 2018 Chemo Starters

@Kip @ktk @LJ @Linda @Georgie Gee Hurrah to you all!

 

@Kip, for being relieved of your tiresome companion; @ktk, for a suite night away; @LJ, for start of rads (love the thoroughness of the NHS with these pregnancy tests!); @Linda, for 9 out of 10 cells eradicated; and @Georgie Gee, for pizza birthdays and the safe and sensible decision -- which sounded like what you wanted anyway -- to save yourself from another bout of sepsis, which is just far too risky.

 

Also, thank you, @Sally, for very good advice on sundry matters, including words of assurance about normal service in the bedroom department. post-chemo.

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Re: June 2018 Chemo Starters

After my 2nd surgery one of my drains was leaking g sp they took it put early. I used to just tape or put in my top a couple of absorbant dressing pads (you can buy a pack of 100 from the chemist ). That worked pretty well to absorb the leakage.
ktk
Member

Re: June 2018 Chemo Starters

Glad you are rid of your drain Kip. Hopefully you will heal quickly and move on. Will you start rads after Christmas ? Kx
Kip Community Champion
Community Champion

Re: June 2018 Chemo Starters

Sounds like you had a lovely break KTK.   I am finally free of the drain.  The surgeon decided that it was 9 days post op and needed to go even though it was still draining.  It came out easily but the nurse is concerned it will leak a bit, so have an XXL plaster on it at the moment and have to watch out for swelling.  I han an awful bag to carry mine in this time, the strap was made from curtain heading tape ( the bit you put your curtain hooks in!!)...dreadful. Now back home with a nicely healing wound, just need to keep fingers crossed for the results next Thursday then hopefully moving on to Rads.

Have a good Friday night everyone...

Kip

xx

ktk
Member

Re: June 2018 Chemo Starters

Just had a lovely mini break with OH. After RT yesterday we went to stay at a hotel and enjoyed a tasting menu and wine flight! We went for a nice autumnal walk by the Yealm, the most exercise I have done for weeks!! We even got a room upgrade to a suite!! Then back for RT at lunchtime today!!!

Glad you had a niche time with your daughter Georgie. Sounds like the right decision re chemo.

I was given little cotton bags to carry my drains in by the BCN. She also gave me a heart shaped pillow to put under my arm. I was lucky as the drains were taken out after three days. One came out really easily but the other one got a bit stuck for a moment.

Love to all Kxxx
LJ
Member

Re: June 2018 Chemo Starters

Linda - sorry just seen your query about PICC line removal.  Mine was removed by the same people who'd been doing the dressing and flushes. I believe they are all sized (like small, medium etc) and each size is the same length, there's just a variance about how much is inside and how much outside. Anyway, because the girls knew how much my outside length was so they could tell for certain whether it was out or not. Just as an aside, mine 'stuck' slightly coming out but lying with my arm down and a warm compress soon shifted it - that's apparently quite common, so no cause for concern if it happens to you. 

 

LJ

Kip Community Champion
Community Champion

Re: June 2018 Chemo Starters

Great news Linda and LJ, both moving forward onto the next part of the journey.  Seems we all are in need of weight help, I blame the chemo brain... I kept forgetting the 10 biscuts I'd already eaten  Smiley Very Happy

I have dressing change today and possible removal of drain, although its still way over the 30ml they want, so perhaps I am stuck with it for a while longer.   Then results of ANC next week, dreading that one, but I guess as they are out whether they had cancer in or not shouldn't make a difference really?  Just want to get moving onto rads and hormones.

Kip

xx

LJ
Member

Re: June 2018 Chemo Starters

Not much slap and tickle going on here either, which made it all the more ironic when I had to have a pregnancy test yesterday as part of my radiotherapy planning meeting!

 

So RT is all set to start on 26 November. We don't have a unit in Swindon so I'm off to Oxford every day - it's only 35 miles, but because of roads and traffic it takes about 1hr 15mins for 9.30ish appointments. Factor in the time needed to find a parking space and you're looking at leaving about 7.30 if not before. Oh well. 

 

Have the next Herceptin injection on Sunday and should find a prescription waiting for me for whichever hormone therapy I'll be taking. (Had a blood test on Monday to determine menopausal status.)  Had hoped to have a bit of a break before starting, but oncologist wants me to start straight away. 

 

Had a long conversation with her about the role of weight loss and exercise as adjuvant treatments for BC. She did say that probably as oncologists they should probably do more to promote it. Anyway, she left me feeling I that was something I could control rather than having it done to me, so I'm trying to get into some sort of walking routine and am getting my head backs into Slimming World. I'd be up for some diet and exercise sharing/support too. Need to shift a stone to get me back to where I was pre chemo and then there's a couple of stone still to go after that!

 

Have good days ladies, may there be only tears of laughter. 

 

LJ

Member

Re: June 2018 Chemo Starters

I discussed proto therapy yesterday when I got my results etc. He said radiotherapy will be fine for me. The Marsden are getting a machine next year too. My right side was affected. Anyway just to let you know my good news I got clear margins due to my amazing surgeon. My response to chemo was good. It killed 9 out of 10 cancer cells so makes the last 6 months or so worthwhile!
I need to wait for another fish test but unlikely to be positive. I now need to wait for my oncology appointment on 4th december to duscuss radio and letrozole.
Awaiting a call re finally getting my picc line removed as it needs doing locally as they have all the mesurements. Has anyone had theirs removed as I go to the nurse rather than the hospital so altho she can do it on Monday I want to make sure it's done by someone who has all the measurements. It can snap so want to ensure it's all removed.
X
Kip Community Champion
Community Champion

Re: June 2018 Chemo Starters

Hi Ladies, thanks for the kind words yesterday regarding weight etc.. would definately welcome some support in the New Year!   Bring it on.. for now just trying to rein in the eating...

Georgie Gee - so glad you managed to escape the hospital and got to have pizza with your daughter.. not what you planned but lovely nonetheless.  Regarding the stopping of chemo... I think you have to go with your ONC, it makes sense that given all you've been through with the last chemos, it is doing you more harm than good and the rads will blast at the area too.   Although we moan about the Oncologists sometimes, they are the experts and ultimatey want what is best.   That said, if you don't feel happy with that decision don't be frightened to say so.   Take care and rest up, and enjoy the fact that chemo is in the past, get your strength back up for the next part of the journey.

 

Reddi - I am now baldish, eyelash less and have a leaky drain to add to the sexual goddess look...oh I'm hot to trot now Smiley LOL

Kip

xx

Member

Re: June 2018 Chemo Starters

Hi Georgie,

Glad you have finally got home and enjoyed your pizza.

Re stopping the chemo and only having radiotherapy, that's all I had 1st time round. My cancer didn't come back so don't worry on that score. I got a separate different, unrelated cancer second time. I also had left sided radiotherapy and there was never really that much said about heart damage because it was angled rather than pointing straight at the heart area. I was told any damage would be minimal, to less than that of a light smoker if I remember rightly. 12 years on and I've never had any heart issues.
Member

Re: June 2018 Chemo Starters

Good evening everyone, 

 

Im sorry that it has taken me a day to get back to you all and report on my meeting with my oncologist.

 

I am just getting my head around it all, and have been catching up with rest today at home. 

 

When i I left the ward yesterday morning, I was surprised when the nurses said that they were not 100% sure that I was being discharged, but all seemed ok so I did go home after my onc appointment with my lovely daughter.  We ordered pizza as requested, and enjoyed our afternoon. 

 

As soon as we entered the consultation room, my oncologist waited for us to settle, and then said that she had made the decision to stop my chemotherapy altogether.  I was shocked, and then actually very relieved, as I was thinking that I would have to negotiate my options going forward.  She actually said that she felt that chemotherapy was actually more life threatening to me than the cancer, given my body's reaction.  I have had 3 bouts of sepsis after 3 FEC and 1 x 75% T.   I do not know whether my views will change further down the line, depending on what could happen in terms of recurrence or secondary ca. 

I will still have herceptin for a year, bone protection for 3 years and 3 weeks of radiotherapy. 

 

I had previously been quite worried about radiotherapy, but after the consultant explained more about the accuracy of the treatment, and measures taken to avoid heart damage (I had left sided BC), I am a bit more reassured.  With an incomplete chemo course, I am also more of the opinion that I need to have RT.  I have no hormone involvement either, so that means there is not anything like tamoxifen that they can throw at the cancer.  

 

I would be be interested to hear what other ladies think about this; to be honest, I feel that I have got away lightly compared to many of you.  My surgery has been completed, and I do not have to consider reconstruction or anything.  

 

It is so good to be home now, and I thank you all very much for your support and humour whilst I was in hospital. 

 

Bye for now

 

Georgie Gee xxx 

 

 

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Re: June 2018 Chemo Starters

Kip,

With with my first op I went to the shops with my drain in my coat pocket. Smiley Happy That was a good look.

I must be lucky in that my weight hasn't changed at all thru this bar the 1-2kg fluctuations that I've always had. My husband has had a good look at my scars, they don't bother him but I was already nipple-less since 2006 since the first cancer so it's just an extension of that really. And now that chemo has finished normal service has more or less resumed in the bedroom department.



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Re: June 2018 Chemo Starters

p.s. Huge guffaw here for "a bald head, no eye lashes and tingley fingers and toes doesn't exactly scream 'love goddess' does it!" Nor does my bedtime program of moisturizing hands and feet and then encasing them in cotton socks and gloves. Nor walls of support pillows. But goddesses we are, nonetheless.

 

I'm pretty sure my OH will be freaked out by the drains. I'm trying to gradually introduce the concept of them.

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Re: June 2018 Chemo Starters

@Kip These first days after the time change, as the earth closes up for the winter, are always hard for me. Not quite as hard as the depths of January, but I do find myself going into hibernation -- exercising less and eating more -- and that was when I wasn't going through cancer treatment. My last pre-chemo weigh-in wasn't good news. I know the doctors prefer weight gain to weight loss, and, as you say, in the scheme of things, it shouldn't matter. But I'm annoyed with myself, too. And I just got home from the shops where I picked up fixings for a nice, healthy barley-mushroom-kale stew -- and a salted caramel brownie. All my willpower is busy with other things. 

 

It sounds like your drain is pretty short, but maybe a little shoulder bag might be used to hold it under a cardigan? I wish I could send you one of my cute but usually useless knitting project bags; they might do the trick. Maybe one of your friends has something fit for purpose and can bring with?

 

Did someone earlier suggest transitioning this thread in the new year to an exercise and diet support forum? Or was that somewhere else? Wherever it was, I suspect I'll be wanting all sorts of support in the new year, as we figure out life post-chemo. It's such a long process, and has such big effects on the body, that it's not surprising that things don't return to "normal" shortly after the end of the final cycle. 💞to all.

Kip Community Champion
Community Champion

Re: June 2018 Chemo Starters

Oh ladies, seems we are all lacking in the bedroom department.  Not suprising really, a bald head, no eye lashes and tingley fingers and toes doesn't exactly scream "love goddess" does it!   Actually I am feeling  particullarly unattractive at the moment, hate how I look, mainly due to the weight gain. I'm off out tonight with some friends and have been trying to find something to wear in my wardrobe which (a) I can fit in to and actually do up and (b) covers up the drain!   Having virtually failed on all fronts I braved the scales and really depressed myself with my 2 stone weight gain... can't even do up any of my winter coats. I know in the scheme of things this shouldn't matter but I am so annoyed with myself for letting it get this way, although I know I haven't exactly been in the dieting exercising frame of mind lately.  In all honesty I keep saying I will address it when treatment is done and I can exercise properly again but I feel so fed up with not feeling like me.... grrr Note to self.. must step away from the biscuit tin....  Rant over... only self to blame... fruit bowl you and I must become friends again!

 

Reddi - sounds like you had a productive meeting... lots to mull over and fully understand why OH opted out.. my hubby is very much "English stiff upper lip" and would have died of embarrassment.

 

Kip

xx

Member

Re: June 2018 Chemo Starters

@Michelle21 Having loads?! Incredible, literally. But I guess we're all different.

 

Fun thing: my OH and I decided that he wouldn't come with me to meet with the surgeon yesterday primarily because I wanted to be straightforward with the surgeon about trying to retain one nipple for sexual/intimacy reasons. We agreed that my OH -- and possibly also my (male) surgeon -- would find that convo a tad awkward. I sensed my OH blanching, just considering it, even though he's perfectly fine chatting with me about the question. As an expat, I can't decide if it's being a boy or being British. Probably a combination.

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Re: June 2018 Chemo Starters

Thanks ladies for being open about your (lack of) intimacy with your OH’s. We’ve had little too since March but I read a book by a lady who had had BC and she and her partner seemed to be at it loads which left me feeling like it was just me, or us as OH hasn’t been interested either. Like you say chemo is not sexy, surgery is uncomfortable and having rads now isn’t putting us in the mood either. I was overjoyed to find out lack of sex drive is a SE of Tamoxifen too! It does make me wonder how we will ever get back to a ‘normal’ sex life. X
Shi Community Champion
Community Champion

Re: June 2018 Chemo Starters

Red rose 😘😘😘👍👍👍brilliant news everything booked for wedding 🌞🌞🌞🌞it’ll come round before you know it now ❤️❤️❤️❤️Kip, after my op, I got my oh over his fear of love iking at me by asking him to just check something out, it made him feel useful and like the protector again if that makes sense? Worked for us so thought I’d share with you 😘😘💕💕✨✨Shi xx
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Re: June 2018 Chemo Starters

@Kip The cryo stuff seemed to work really well in the first T cycle -- when I got Herceptin and Perjeta the day before, so docetaxel was given straight away when I got into the CDU. These past 2 cycles they haven't seemed to do much -- sitting in a chiller bag, even with an ice pack, for 8 hours before they are used means that aren't nearly so cold. (The first cycle the socks were so cold, they were barely bearable. Not so, the last 2 times.) The tingling is across all of my fingers and occasionally in the palm of my hands. I guess I underestimated this SE. Grrr. I hope your Tingle stays quiet after your armpits start to come back to normal.

 

@cdc Good work on becoming a Breast Density Matters ambassador! 🥂I know this is an issue about which you are passionate, and your story is compelling -- exactly what is needed to get some change in screening policy. 

 

@Georgie Gee Are you home??? I do hope so.

 

I haven't had surgery yet, but physical intimacy has been awol since my first biopsies, in large part because I was so sensitive in the breasts that it's strange to try to be intimate without touching them -- and my OH and I just think of the cancer then, so we avoid it. 😕(Def TMI, but can't find less specific words for this that aren't super confusing.) Plus, chemo isn't exactly sexy. But as I was thinking about surgery options -- and I will have options -- I realized I need to weigh long-haul considerations like this to help ensure I'm happy and recovering post-treatment in something like the way I'm imagining in my little future projections. Which reminds me that I need to book in with the therapist! (Once a New Yorker, always a New Yorker.)

 

Surgeon meeting report! 🔪

 

Meeting with the surgeon was very helpful, though I could tell *he* didn't understand why I wanted to meet with him now since he thought it was obvious that we'd wait til the post-chemo MRI to make the decision. Well, yes, but my case is complicated and I'm going to need more than a day or two to explore pros/cons and wrap my head around how the surgeries will interact with continuing treatment and reconstruction.

 

Surgeon's current plan is comforting, actually: the oncologist was wrong, and he is planning to spare the left nipple, even though the lesion is somewhat close to the areola. If the path report doesn't have clear margins, then the nipple will need to be removed in a re-excision. For the right breast, he estimates that about 1/3rd of the tissue is DCIS, with some probably much smaller area of IDC, though they cannot tell from any scans which is which. Without yet seeing the post-chemo MRI, he would suggest a mammoplasty partial mastectomy, possibly/probably taking the right nipple, even though there is no cancer visible in the MRI, since multiple ducts are involved. If he doesn't get clear margins, then we'd go with full mastectomy as the follow-up surgery rather than re-excision, since DCIS doesn't tend to respond to chemo and they would be cutting blindly. There was also an area of LCIS in one of the right breast biopsies, and LCIS has a great risk of recurrence by 20 years -- and in some cases, the secondary cancer is in the other breast. However, I can't imagine that there's much science proving that it's a secondary of the original LCIS, since genetic analysis of individual tumors isn't standard practice yet; probably just some general genetic disposition that isn't a mutation in BRCA1 or BRCA2, so I'm strongly leaning against a prophylactic mastectomy of the left breast.

 

I'll be spending the next 3-4 weeks weighing the pros and cons of going forward with mastectomy versus having a breast-conserving mammoplasty partial mastectomy on the right breast. There's just not much tissue to move around at the time of the initial surgery, so I might decide mastectomy, as my remaining tissue probably won't be breast-shaped after  the procedure; indeed, I thought that over 20-25% of tissue, the general rule was to do a mastectomy on smaller-breasted women. [Edited to correct info: definitely not a mammoplasty option for me. At 20-40% of tissue removed, it's technically a partial mastectomy. It seems that if the path report is clear, the breast might be reconstructed with a pedicled LD "miniflap" before RT; otherwise it's a free miniflap year after RT -- but with less tissue harvested from the donor site. I guess I need to start a surgery thread.]

 

I think I'll also see if anyone in the Someone Like Me program matches up with my current cup size (36B/34C) and had a similar decision -- particularly someone who took the mammoplasty option. (I don't think anyone in June chemo starters did, but let me know if I'm wrong!) 

Kip Community Champion
Community Champion

Re: June 2018 Chemo Starters

CDC - sorry I wanted to add that I think intimacy is last on a lot of our lists... my husband is still not keen to see my scars, especially now I have a drain in tow!   I think thats something we need to work on once treatment is over and I can start to feel like a woman again.. still look in the mirror and don't recognise myself (facially or bodily)... In fact hubby has been sleeping down stairs since this last operation as he is scared he will pull out the drain by accident... I think on the whole he is very squeemish...and must say double bed to myself is rather nice but a big lonely.

 

Ooh.. just got the post and I've received my NHS survey to fill in...something to pass the time

xx

Kip Community Champion
Community Champion

Re: June 2018 Chemo Starters

That is so interesting CDC and so impressive that you will get to speak out about this issue.  I am sure when I had my initial mamograme and then subsequent U/S and biopsy the doctor said that due to my age my breasts were dense and they couldn't see anything on the U/S.  Its one of the things I will be asking about as/when I get to a point of discussing future check ups.  

Sorry to hear the SEs are plaguing you again, but good it isnt the nausea.  Those steroids are devils aren't they and it does start to feel like this journey is never ending.  I am so fed up of the drain being in, still no sign of it leaving any time soon and its makign me feel like a patient too.   Im at the hospital tomorrow for the dressing check so hoping that can advise on whether this is normal to be draining so much still.  Just another thing to worry about.

 

Reddi -  Sounds like you had a nightare day waiting around and then the needle thing.. grrrr.  I had 2 lots of chemo using the vein under the thumb.. painful!!!  And I got a big bruise there too.  Is the ice on your hands helping with the neuropathy?  My tingle thumb is still a bit tingly but I think it is coming back to life slowly, I still get pins n needles going through my hand occasionaly though.   But now I have a numb armpit and arm to deal with so focusing on that sensation now.

 

KTK - good that the rads are going well, what are you using to moisturise?

 

Kip

xx

Member

Re: June 2018 Chemo Starters

OOh I forgot to say that after signing and commenting on a petition for an Inform Law (which would mean that people are told of their breast density and what this might mean with regards to an increased risk of BC and a need for further screening) I was contacted by Cheryl Cruwys the co-founder of Breast Density Matters. She has asked me to become a BDM ambassador and will be sharing my experience* at the biggest Cancer conference in the UK - Britain Against Cancer- being held on the 4th Dec at Westminster, She is also sharing my story with Craig Tracey MP as he has delivered briefings on the subject in the House of Commons and is a supporter of UK Breast Density Education Effort! If anyone else has a similar experience to share then let me know or check out the Breast Density Matters UK facebook page. The more we can get the information out there the better. Hopefully tumours will be picked up earlier and need less drastic treatment.

* For those that don't know already - I had yearly mammograms for 8 years due tohigh familial risk. The last one was less than a year before I felt a thickening of tissue on my breasts. After a private U/S I discovered that I have extremely dense tissue and as this shows up as white, any tumours are masked on mammogram as they also show up as white. Very dense tissue also raises the risk of BC. I should have been having MRIs but these are officially only available on the NHS to people who have the BRCA1 or 2 gene. The tumour on the left didnt even show up on U/S and the size of the one on the right was underestimated.
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Re: June 2018 Chemo Starters

Hi everyone

Sorry for being so quiet but Im also finding it hard to cope mentally and physically after my 3rd cycle of paclitaxel. I'm so sick of treatment and for the first time I truly feel like a cancer patient. I think I was also extremely unsettled by my appointment at the Marsden.
Waiting to hear if I can see a different consultant for their opinion.

Reddi So sorry to hear about your SEs, long waits and defensive and tetchy BCN. Since my assigned BCN moved to another department, I find her replacement less helpful and feel like I am 'bothering' her.
I also requested an appointment with my original surgeon which seemed to get her back up. Maybe I am just over sensitive and imagining things. How did your appointment go? I hope you have some answers and it will help you to make a decision. I have some nipple sensation remaining following my TM but not a lot. If I do have to have a mastectomy I've been told I will lose my nipples. I was sad about this for both my OH and my sake but to be blunt, intimacy has not really been on the radar recently!! Sorry if thats TMI.

Georgie Gee Hope you've finally escaped Casa NHS and are enjoying spending time with your daughter on her birthday.

ktk Good to hear you are finally feeling better four weeks post the dreaded T. Hope rads are going OK and the moisturising is helping. Im still waiting to hear if rads are still on the agenda for me.

I thought the weekly P would be a breeze in comparison to T but I was also warned of accumulative SEs. Because I've had a week's break the SEs seem to have come back with avengeance especially the downer coming off the IV steroids. My neuropathy seems somewhat better though. Seeing the oncologist tomorrow to make a decision about Fridays session.

RedRose - lovely news about the wedding. Enjoy the preparations. I've also never heard of the ball-bearings being used with regards to radiotherapy. Its interesting how each hospital does things differently. Hope your last chemo session has gone ok and you don't have too many side effects. I can sympathise with the cold body and hot head scenario. Menopausal symptoms are just the latest in chemo's lovely arsenal of SEs for me!

Kip Hope you can get rid of those ***** drains soon! I've got a strange taste in my mouth for the majority of time now. Wasn't expecting to get it on P. I am very glad that I have no nausea though although I've discovered that sometimes my hospital stops taxanes if they are causing too many problems and gives another 2 sessions of AC instead. I can sort of cope with the numb toes but the nausea was horrendous so I hope to carry on with the P for as long as possible.

Really very interesting to hear about the Proton therapy at the Rutherford. Obviously cost prohibitive for the majority. I wonder if it will eventually become standard treatment. I sometimes wonder if in years to come people will read about radio and chemotherapy and consider them barbaric!

My daughter is off to a Halloween party being organised by her Aunt so I think I'm going to go and have a rest while she's out. Feeling so fatigued. I have five hospital appointments over the next 3 days. Wish I could just sleep through them all and wake up when everything is finished.

Take care everyone xxx
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Re: June 2018 Chemo Starters

@ktk I wish I might be a candidate for therapeutic mammoplasty, but I don't think I am -- too small, I think. I'd take less sensation over no sensation if that were an option. A question to add to my list for the surgeon this afternoon. Thank you!

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Re: June 2018 Chemo Starters

@Kip I'm on TPH (docetaxel plus HER2-targeted drugs Perjeta and Herceptin). SEs could be the combination or just the docetaxel; no idea. With your report, I'm focusing on looking forward to the other side of chemo SEs come December!

 

I'm at a big teaching hospital in London, so I'm constantly meeting new doctors, too; I've seen so many oncologists, I've lost track. For just usual pre-chemo appointments, I've seen 5 or 6. Then there are an additional 4 or 5 I've seen in A&E or on ward when dealing with infections. I was so happy when I saw the same onco for 2 appointments in a row. 

 

Forgot to note that I had pins and needles through my last cycle, not so much that I was worried (no blistering and very little peeling, unlike @cdc, who has had it bad), but enough that the oncologist considered lowering my dose of T. But because I'm already on 75-80% dose (starting from first cycle of T, due to liver function issues), she decided to hold steady; next time, it might go down to 50%. 

 

(Actually, last week was one assault after another: my BCN got defensive and tetchy about the surgeon appointment request, scolding me for asking the oncologist anything about my treatment plan and basically dismissing my questions in an email; then on Friday my chemo nurse left me waiting in reception for 2.5 hours -- just overlooked my name on the sign-in sheet -- so I had yet another very long day; this also meant that my cryo sock and hand wraps, which are intended to help fight against peripheral neuropathy and nail damage, were no longer ice-cold when it was finally time for T at 4:30pm; the same nurse also completely missed my vein when attempting my cannula, causing a lot of pain and forcing use of the site under my thumb, which clearly wasn't up to it, given the big bruise that emerged. Indeed, when I hadn't got a cannula in by 11:30am and did the maths for when T would start, I broke down crying, knowing that my cryo stuff had been thawing since I left the flat at 8:40am. Had to convince them that I wasn't needle phobic but needle philiac. Only makes sense that SEs this week would be worse this time -- I already felt well and truly beleagured before the drugs even entered my body. I think it does make a difference.) 

ktk
Member

Re: June 2018 Chemo Starters

Hi Reddi. I felt dreadful after T3. Onc had suggested that he could reduce the dose but I said to hit me with the full dose. I have only really felt better this week, four weeks post chemo.

I am on 15 + 4 booster sessions. I’m moisturising like mad!!

I had TM on both sides. They cut off my nipples and stuck them back on!! They look ok, and there is some sensation although not the same as before.

Hope everyone is well and that Georgie has escaped and is enjoying birthday celebrations 🎉 Kx
Kip Community Champion
Community Champion

Re: June 2018 Chemo Starters

Hi Reddi, good to hear from you.   Seems you have a lot of decisions to make too.  Sorry only had straight forward MX, no nipple to save unfortuantely, but well worth discussion if you can save and swap.   Sorry to hear the SEs are bugging you, is it T?  If so, I found the SEs varied each cycle (with exception of the lardy mouth which was there everytime).   But glad to say, 5 weeks post chemo, everything fading, now just dealing with the ANC op SEs instead. 

Hear's hoping you get some good answers from your surgeon.   I find I see one person for a couple of appoitments and then never see them again.  I have an appointment on Friday to have dressing removed/changed and its a lucky dip who I will see.  I saw one surgeon to discuss my ANC and then when I went into hopsital found the surgeon I had wasn't her at all... pick n mix at Ipswich I think.  At least the ONC has remained the same, although I have only seen her 3 times I think (only twice throughout chemo too).

Kip

xx

Member

Re: June 2018 Chemo Starters

Hi all. So much happening since my last check-in.

 

@Georgie Good luck today! I hope you get home, get your belated birthday(s), even if small-scale for now, and sort out things with your oncology team. 🎂Stand strong in pushing your doctors for explanations and answers and for figuring out what the best and better options are for *you*.

 

@RedRose Congratulations on the wedding bookings! 👰💐You must be so excited. "Enjoy" your last cycle today, too.

 

@ktk Will be eager to hear your reports from rads. From reading a bit about the side effects, it sounds as though things build up day by day, with some people feeling the effects mostly after they finish the sessions. Have they given you any sense for the dynamics? Do you have 3 weeks of rads? Or did you get prescribed a booster, too?

 

@Kip What a drag about your drain. It's good to give it the time it demands, however -- and you'll be all the more delighted to see the end of it. I only had 4 nodes out on left and 5 out on right for my SNLB, and I had off-and-on numbness for weeks afterward; occasionally, I still get some. (Need to get back into my routine of doing exercises every day; at the very least, they help loosen up my shoulders.)

 

@cdc How are your feet and hands holding up??

 

I'm sure I'm missing people. Will circle round after posting.

 

On proton therapy: From what I know, it's not that proton therapy -- which sounds like a form of targeted radiotherapy that can be more pinpointed to cancerous tissue -- is unsuitable for all cases of breast cancer; it's just that it's quite expensive and the benefits for many cases of breast cancer don't support its use. Proton therapy seems to be more used in children who are still developing, so radiation damage to healthy cells can have significant effects, and in cases of cancer in the spine, where the risk of radiation exposure to the heart is very high. I looked into it because my left breast tumor is on the interior, so if they proceed with lumpectomy on that side, the breathing exercises to protect my heart and lung will be essential. 

 

Having a pretty crappy cycle 6. I was fine for the first 3 days, but then midway through Monday (day 4), I was clobbered. I'd been to the hospital in the morning for reflexology and a check on my cannula site, which developed a big bruise while I was sleeping on chemo night, and felt tired on the walk home from the bus. By the evening, I had pain across my shoulders/back and through my legs and arms, with stabbing pain in my esophagus now and again, and I was exhausted. Yesterday was slightly better, but still much harder than the same day in cycle 5. Today I woke to what feels like a UTI. As I am off to the hospital this afternoon to meet with my surgeon, I thought I'd go early and drop by the chemo hotline office rather than call.

 

Meeting with surgeon to discuss state of play. Last week I'd asked my oncologist some questions about my MRI and surgery planning, as I know decisions about mastectomy or lumpectomy will move very quickly after cycle 7. The oncologist couldn't answer based on my case file, so requested a surgeon meeting asap. Afterward I realized that I haven't seen my assigned surgeon (except for speedy SLNB consent and the operation) since before my pre-chemo MRI; my treatment plan meeting was with oncology and was focused on chemotherapy consent. Because the stuff in my right breast isn't palpable or visible on US or mammogram (beyond microcalcification clusters), I've only got a vague sense of what is going on there. At one point my nurse suggested that the plan is for two lumpectomies (left and right), but I don't know if that is accurate, and even if they advise two lumpectomies, I don't know if either nipple can be spared. (I'd really like to spare one nipple, if at all possible -- maybe with a graft from right to left? who knows -- and if I can't, I might just go ahead with a bilateral mastectomy; it's not about look for me, but about physical sensation.) And of course, surgery decisions are interwoven with radiotherapy, too. Would love to know if any of you discussed nipple-sparing options with your teams, and what sort of feedback you got...

Kip Community Champion
Community Champion

Re: June 2018 Chemo Starters

KTK - glad first one done.  Yes I guess its a very different process being stuck alone in a machine, I like to be around people and chatting so I may feel the same too.  I hated being in the MRI machine with nobody to talk to.  

RedRose - crikey ball bearings taped to you... wow... wonder what I will get?   Fingers crossed for the last chemo... yayayyyy thats a fab feeling, just ride out the SEs and then move on.  Good news about the wedding, thats definately something to focus on!  Hope you slept well.

 

The proton therapy sounds interesting, shame its not suitable for BC, but there are always hopes for the future hey.   Thanks for the information though.

 

Im still attached to my drain, hoping tomorrow might be the day we part company.  Still stiff, but not too bad, bit sore underneath and the numbness makes me feel weird under the arm but musn't grumble.

 

GeorgieGee - are you ready to be rescued?

 

Kip

xx

 

Member

Re: June 2018 Chemo Starters

Hi,
Has anyone finished chemo and got a very salty taste still? I finished 8 weeks ago.
I asked my oncologist re proton therapy as was considering it instead of radio as causes less damage to your body. She said that its not prooved to work for breast cancer and only things tried and tested are used by the NHS so that put me off. There is one at the Rutherford Group www.therutherford.co.uk n south Wales. I have contact details if you would like them as my friend discussed my case with them. You can google them too. They offer therapy for breast cancer. The private cost is circa £50k but no waiting time, price could be negotiated if not fully utilised?? Its £200 for a consultation. Its 4 tiles the strength of the Czech facility so less treatment time is neede. Hope that helps.
Linda
ktk
Member

Re: June 2018 Chemo Starters

Red Rose very excited for you. Something lovely to look forward to.

First rads ok. They remarked the ratios with pen. No ball bearings for me! Actually I found the procedure a bit intimidating. After chemo which is so communal with lots going on and people to talk to this was very lonely. Just the two radiographers getting you into position then they leave you and you get a disembodied voice instructing you to breathe. They said the first session is the longest. Back again this afternoon. Kxx
Member

Re: June 2018 Chemo Starters

KTK how was the first rads? Georgie hope your ok. Numbness does sound great Kip but their out, are you in pain? Xx
Member

Re: June 2018 Chemo Starters

Hi Kip, the wire was to highlight the target 🎯 area of the left breast while in the CT machine and the ball bearings were taped to where they did the tattoos to highlight these areas. I was gonna joke and say that the maintenance man had them left over when fiddling with the machine and gave them me to use as stress balls 🙊 but thought it may be too much. Church and venue all booked for the wedding 💒 eeeek! Going to try and get a reasonable nights sleep as last chemo tomorrow, but may be difficult as excited and body is cold and head having a hot flush. Goodnight all xx
Kip Community Champion
Community Champion

Re: June 2018 Chemo Starters

Hi RedRose, so good to hear you sounding upbeat and things progressjng nicely.  What is the wire and ball bearings for?  Didnt know about that!!  And excellent to hear the wedding planning is in full swjng that is wonderful and something exciting to look forward to.  I look like a GI Jane so will suit a tank, ill watch for you swinging in too.  

Ktk ... Oh i have a while to put up with the numb pit then...  Oh well hopefully it will feel better once tth drain comes out??  How did your first Rads go?  How many weeks do you have?

Member

Re: June 2018 Chemo Starters

Just sat reading the latest post while waiting for O/H. We are having the best of luck at the moment, Georgie Gee, I hope your stay at hotel 🏨 NHS is not too mind numbing and that you sort out your treatment plan as you want it. I don’t know about swinging from the rope thing after the chemo tomorrow but I can nick some of the step sons camo gear and rock up in that? Hair is very GI Jane at the moment for all of us so very fitting. Randomly have “we are in the army now” singing in my head 🎶. I hope everyone’s side effect are getting better? How’s the numbness, feet, swollen throats and drains and op sites? I too have had the cancer survey thing, which I won’t be completely just yet, a few q&a’s with the hospital first. Got to shoot off for now ladies, be back later, got to go see a 👨🏻‍💼 about ringing a bell ⛪ 🔔 👰🏼 🤵. Xx
Member

Re: June 2018 Chemo Starters

Evening Ladies. Sorry for my absence, been no stop over past few days. Had radiation planning meeting wire round breast and ball bearings stuck in place so would show up, they now have their measurements and I’m no longer a tattoo virgin 😱. Radiation starts 26th November for 4 weeks as I’m having a weeks boost apparently. Went to oncologist who said I’m better than I was but still swollen and red. So put me down for scan on leg for blood clot/dvt. Just ready to leave hospital with blood thinners and get called back and said they wanted to do it that day. Long story but no dvt or clot they reckon it just my veins and the side effects of chemo causing the redness and swelling. Chemo is going a head tomorrow at the reduced dose of 60% apparently I can get away without it as I have had the full 100% on doses up to yet but want too just to be sure. Fingers crossed both treatments should be done by the Friday just before Christmas. On a happier note we have also been to church ⛪ to see about the dates available and if the O/H can wing his way back here pretty sharpish, tonight we are going to book the church 💍👰🏼🤵 and reception venue. Something nice to do before Halloween 🎃 chemo session and finally ringing the bell 🔔 for my last one xxxx
ktk
Member

Re: June 2018 Chemo Starters

Morning all. Hope you are beginning to feel better Georgie and can celebrate tomorrow.
Kip the numbness in your pit lasts for ages. Really only just got sensation and my op was May!
I was due to start rads this morning and the phone rang as I was walking out the door to say one of the machine was not working. So I am going in this afternoon instead.
Love to all xxx
Kip Community Champion
Community Champion

Re: June 2018 Chemo Starters

Yes Georgie Gee, Shi is right.. you ask all the questions you need... and don't be pushed into anything you don't feel happy with.. its your body... It may be good to have your daughter there to hear all the information and to offer her opinions too.. take it all into consideration and take your time. 

Look out for the rope...I'll be swinging in on Wednesday, commando rolling across the floor and whisking you and your daughter out of there.. the tank will be revving! For now, rest up and prepare for Operation Breakout!

 

I'm still attached to my lovely drain and will be again today, 1 week ago I was on the operating table, time flies when you are having fun Smiley Frustrated  I'm working on the exercises, weird being so numb under the armpit though!  

Hope everyone else is doing ok, CDC hope the SEs are being kind and the numblies are behaving.

KTK - how are you doing?  Coming through the chemo fog now?  When do you start Rads?

RedRose - how are you doing?   Hows the arms/hands and feet?  

Kip

xx

 

Shi Community Champion
Community Champion

Re: June 2018 Chemo Starters

Hi Georgie gee 😘😘😘👭👭👭👭sorry to hear you are being kept in a little longer and sending you big hug and 🤞🤞that some of Wednesday is salvageable. You should do a double birthday next year with a girls shopping week in New York or anything you fancy just as long as you spoil yourselves 😘😘to make up for these ones, in fact just do it as soon as you’ve finished treatments 👍👍Get your list of questions ready for your onc, you can post them on here if you think there might be something else you need to ask and we could help if you want us too. There is the someone like me facility on the bccf if you need to speak to someone. You’ll need to make choices and decisions that are right for you darling, it’s your journey and you are in control even if you don’t feel like you are. Sending you lots of ❤️❤️❤️❤️😘😘😘💕💕💕✨✨✨✨✨✨now if you see a rope come down through the ceiling that’s kip doing her Tom cruise mission impossible rescue to you because this isn’t mission impossible and everything is possible ❤️❤️❤️Shi xx
Member

Re: June 2018 Chemo Starters

Good evening Ladies,

I hope the tank is patient! The doctors told me this morning that they are not letting me out until Wednesday.

The antibiotics for my kind of sepsis are only IV, and therefore I have to stay here to receive them.

I was quite shocked, but in a way I guess they are right to be cautious. NaughtyPhils are ok but they are keeping an eye on them.
My daughter was scheduled to come on Wednesday, as it's her birthday, and we were going to have lunch and be together. My birthday in September was the day after a chemo so I did absolutely nothing, so it was going to be a double birthday!
So Wednesday has changed quite a lot... first thing, birthday girl will come here and collect me from the ward. We will then go to have picc line check up and to see oncologist, which as you say Kip, will take as long as it takes to discuss everything thoroughly. Then I really really hope that we can go home and have at least lunch and the afternoon together.

Thank you everyone for your best wishes and support. It will be better I think when I know what the plan is, but I don't think it will be an easy discussion as my daughter doesn't want me to carry on with chemo.

Bye for now
Georgie Gee xx
Kip Community Champion
Community Champion

Re: June 2018 Chemo Starters

Morning Ladies...

Georgie Gee - loving the NaughtyPhils!  Good name... I've got the tank revving up, music ready to go and hot pants sparkling..lets break you out.

On a serious note, I think everyone has the right to refuse or question any treatment they are offered.  You should definately have a big chat with your ONC, you sound like you have lots of information at the ready, take a list of questions and don't leave until you are satisfied.  You have had to deal with a lot of issues and only you know what more you can take.  I had 3 FEC and 3 T, but was told the 2nd and 3rd T were reduced due to me being in hospital with NaughtyPhils, they didn't say how much they reduced them by, but did say that it was usual to have 100% of T first time round and then reduce them for the subsequent cycles.  

Its interesting to read about the Proton treatment, shame the new machines aren't ready yet though, but worth discussing.   Its good to know that treatments are progressing all the time, even it not ready for us just yet.

CDC - glad you got the chemo, not glad you have the tingles and numbles again.   Hopefully it will go as the chemo gets throught, my Tingle is definately improving post chemo, its 5 weeks ago since last one and the tip is still  numb but a lot less than before, so hopefully  you will be the same.   Hope those SEs are minimal and you feel brighter soon. 

I can't remember if it was on this thread or the May Surgery thread, but there was discussion about finding suitable post op bras?   Anyway, I asked a friend of mine who had MX 2 years ago and she buys hers from a catalogue called Nicola Jane (on line website).  They aren't always the cheapest but do offer all sorts of styles and fabrics.  My friend is large busted and finds that when she bends forward (she is a nurse so has to lean over patients) sometimes she would flash a hint of lopsided cleavage and Nicola Jane do bras which have a built in panel to prevent this, worth looking at.  She also buys from M&S and Debenhams but N Jane is her preferred outlet.  They also seem to do swimwear, clothing and have a range of bras not only for MX but for reconstruction and radiotherapy.  I feel some online shopping coming on and I can't blame the chemo brain now!  Eeek.

Kip

x

Shi Community Champion
Community Champion

Re: June 2018 Chemo Starters

Georgie gee, get the bag packed, me, ladybowler and kip will be 💃🏻💃🏻💃🏻🕺🕺🕺🕺👩‍🎨👩‍🎨👩‍🎨👩‍🎨to walk like an Egyptian by the bangles in the morning so those naughtfiles had better behave 🔫🔫🔫you need to let us know your escape tune so we can have it ready in the tank for you 👍👍kip you’ve got that covered haven’t you mate 👍ladybowler, sequinned hot pants hooked up and off we go to get Georgie gee out. Georgie, did you manage the agadoo over your cuppa? 😂🤣😂🤣😂if not tomorrow’s mission is to fling a sock as far as you can and say the wind must have too it 🤪🤪🤪🤪🤪or you could do a mai7 special she launched her wig across the ward once 😁😁😁classic thread moment 😘😘😘💕💕💕✨✨✨Shi xx
Member

Re: June 2018 Chemo Starters

I’ve been told 3 weeks of Paclitaxel is the equivalent to one full dose of Docetaxol. As I’d already had one docetaxol and now have 3 Paclitaxel under my belt (albeit the last one at 80% of the dose) I have the equivalent of 2 x T left. My team are worried about permanent damage to the nerves in my feet especially and I’ve been told I could end up not being able to walk if they carried on with chemo regardless. I suppose we just have to trust our teams to get the balance right between ensuring the chemo has done its job and making sure it doesn’t damage our bodies in other ways. I feel that I have little control over their decisions. I suppose ultimately we have the right to say we no longer wish to continue. I’ve certainly felt like that at times!

Take care x