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June 2018 Chemo Starters

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Re: June 2018 Chemo Starters

Hi reddi, I started my rads on Monday so today was number 4/20. Just leaving hospital now and looking forward to getting home, whipping the bra off and slapping on the moisturizer 😆 xx
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Re: June 2018 Chemo Starters

@Kip (& @RedRose?) Again, thinking of you as you begin rads today. May you get in and swiftly and smother yourself in creams afterward!
Kip Community Champion
Community Champion

Re: June 2018 Chemo Starters

Hello there,

Reddi - goodness me what a day you had!  Glad your eyes are improving.  I had terrrible dry watery eyes after chemo (and throughout the last sessions too actually).  They got really sore from all the watering.  Funnily enough I never really noticed it stopping and only just realised that it has over the last week or so.  I think also due to eyelashes returning?   Can't believe you had to turn around and go back to hospital.. but it sounds like you have a good plan in place for moving forward, and if you can get it done before Christmas you can sit back and recover and be pampered (oh and eat lots!!).  

Shi - thanks for the juke box.. I'm going to check out the locals at the Radiotherapy centre and see if any potential boogiers there!

Kip

x

Member

Re: June 2018 Chemo Starters

@cdc Just saw your note in the surgery thread about your friend who's just been diagnosed. It just never stops. Feels like the only thing to do sometimes is scream in aggravation, sadness, and camaraderie.

Member

Re: June 2018 Chemo Starters

Well, more news from me: I've got a new surgeon, one who is an oncoplastic surgeon, and she is recommending nipple-sparing lumpectomy on the left and nipple-sparing mastectomy on the right with immediate reconstruction using an implant (the only option for nipple-sparing surgery that makes sense for me, given the need to do it relatively quickly after completing neoadjuvant chemotherapy). It's highly likely I won't need radiotherapy on the right side and she feels a breast-conserving surgery would leave me saddled with the worst of all options for more than a year -- it would require rads on that side and leave me with a super strange-shaped mound of tissue to deal with for more than a year. She's also suggesting surgery on 13 Dec, if my immune system is recovered enough from chemo. 

 

I had been somewhat persuaded that using my own tissue would be better than using an implant, but my mom has implants from having about half her breast tissue removed for fibrocystic disease when she was in her twenties, so I'm also not opposed to the implant option. Having seen a bunch of photos, and talked through pros and cons, including risks, I feel happy with this approach. It will also ensure I have good donor sites intact should I need mastectomy of my left breast later on, or more surgery on the right breast, say, if the reconstruction fails or I have a recurrence.

 

What an eventful day at the hospital! (And on our 10th wedding annivesary!)

Member

Re: June 2018 Chemo Starters

@Kip & @RedRose You both start RT tomorrow, yes? Thinking of you -- with godspeed.

Eye is on the mend. Pressure has normalized and the inflammation is much improved. Thankfully, that means I can stop the drops that dilate my eye, so I should be able to see more clearly in about 12 hours. However, I've got 6 weeks of steroid drops to take -- a very slow tapering -- and my eyes seem to be very dried out from chemo (thus all the watering to compensate). So eye drops for that now, too.

And after spending the whole morning at the hospital, got home at 2:30pm to discover an appointment letter to see the surgeon -- at 3:30pm today. Called and they asked me to come in if I could manage it. So had to turn heel -- arrived just in time, but of course the clinic is running late.
Shi Community Champion
Community Champion

Re: June 2018 Chemo Starters

Kip 😘😘 it’s like the movie ground hog day darling 😘😘but it does go quick promise, now everybody was Kung fu fighting on the jukebox for your lovely 🥊🥊🥊💪💪💪💪👭👭👭👭brilliant beautiful ladies 💕💕💕✨✨✨Shi xx
Kip Community Champion
Community Champion

Re: June 2018 Chemo Starters

Oh Sally that will be a long wait for Rads won't it.   Fingers crossed everything gets moving quickly.   I hadn't thought about what happens when the eyelashes get longer, mine are coming through but still quite short so not a problem at the moment.  There's always something to deal with isn't there.  Sorry to hear you are still suffering with the hair loss, do you think it could be because the folicles were weakened by the chemo anyway, perhaps once they are gone they will start re-growing again?  Once they start they come on pretty quickly.  Thats just anothing thing you could do without.

One more day until I start Rads... actually quite nervous, not sure why as I know it won't hurt and is over quickly...its just being back at hospital again I think.

Today my legs aren't feeling quite so achy (the epsom bath I think) but my back is still stiff across the bottom and round the hips.  

 

Shi- I'll make sure the tank is fully stocked and ready to rock!

Kip

xx

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Re: June 2018 Chemo Starters

Morning all.

Looks like if I do have rads I'll be way behind everyone else and it'll be getting on for a year after I was diagnosed and 10 months post surgery. Mine was lobular so a spread rather than a tumour but it was 11cms so who knows. If I do it'll be at St Thomas' which is a 2 minute walk from work so getting there won't be an issue. I've an appointment on 12th December when I find out more. I finally have an appointment next week to have a fitting for a prosthesis. I have to take a post surgery bra with me because nothing is provided locally. I have the ones I got from Asda so I'll take the least uncomfortable one with me and see how it goes.

My hair loss since finishing chemo and starting letrozole is still continuing. My pillow is covered every day and I'm still only washing it once a week because I lose so much when I do. It's been 6 weeks now and hair is growing everywhere else but nothing on my head. My eyelashes are giving me trouble. I've had to snip a couple that were so long, and the nurse at work had to remove one that was curling into my eye and couldn't be trained upwards.

The joys we have to deal with not to mention the extra money we have to spend on stuff.
Member

Re: June 2018 Chemo Starters

LJ What a journey! Glad you got there in time. Are you still expected to go in on Christmas Eve?!!

Good to hear you've finished ktk and you haven't suffered form fatigue. Like chemo the rads seem to affect everyone differently. I'm still waiting to find out if i'll need them. At my meeting at the Marsden yesterday the consultant told me they do advise radiotherapy for anyone with a tumour over 5cm. Mine was 5.2. However, the decision will be made once I get the final histopathology back after my mastectomy.
Kip hope all goes well when you start rads on Thurs.

Reddi Hope your eyes are feeling better.

Red Rose How did you get on with your first rads? I realise you were understandably nervous. Hope it went smoothly and you aren't having any SEs.

Sally any news on rads for you?

Take care everyone and hope we can all get some well needed sleep tonight. x


Shi Community Champion
Community Champion

Re: June 2018 Chemo Starters

Please keep yourselves hydrated during rads, it helped me for sure 😘😘seems a lot of us lost our dads early and for me I know my dads been by my side through this ❤️❤️As I am sure yours have too, we were their little girls and always will be ❤️❤️ Get your meet up planned ladies, kip get the tank warmed up to gather the troops for a great meet up ❤️❤️ And to also throw red rose another hen do too 😘😘💕💕✨✨Shi xx
Kip Community Champion
Community Champion

Re: June 2018 Chemo Starters

Glad No 2 was ok LJ tho the journey doesnt sojnd fhn!  I start Thursday and find my arm gets stiff if j dont regularly exercise it!

ktk
Member

Re: June 2018 Chemo Starters

LJ do keep up the exercises. I found that I began to get cording under my arm. Just kept stretching and massaging!! I’m finished now but my boob became very itchy with a sort of heat rash in the last week. Piriton helped! I was warned I would become fatigued but that never happened. Good luck with your session. Kx
LJ
Member

Re: June 2018 Chemo Starters

RT number 2 complete!  Only 18 to go!  Journey was rubbish once again, hour and three-quarters fro a 35 mile trip. We got parked and checked in just in time. I'd barely rested my behind in the seat and they called me. We left the car park 25 mins after arriving!

 

I've got my post surgery exercise sheet back out - I've got really good movement in my shoulders but I think if I'm not careful the RT 'position' will see them stiffening up and I don't want that. 

 

How's everyine else finding it?  Kip - is it tomorrow you start, or Thursday?

 

LJ

Kip Community Champion
Community Champion

Re: June 2018 Chemo Starters

Oh LJ what a nightamre... Christmas Eve really!!!   Surely they must change that... thats the last place you want to be on Christmas Eve.  When they were booking my RT they did mentioned it may fall over christmas and I was beginning to think I may be going up there in the middle of cooking a turkey!

 

Reddi - thanks for your kinds words.   xxxx

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Re: June 2018 Chemo Starters

@LJ You've gotta be kidding. I'm sure they can find another appointment very soon after (or before!). They talk about the psychosocial aspects of managing this essentially chronic disease; surely the oncologist can appreciate that -- for you -- having an appointment on that day wouldn't be supportive and rearrange it. (Not all families celebrate Christmas, so I can understand the desire to fill every slot available, but they probably expect that some portion of the people with an appointment scheduled for that day will want to rebook.)  

 

@Kip & @cdc & @Red Rose Your remembrances of your fathers, and your loss of them, have been very moving. I've been left at a loss for words in reply to them. Thank you for sharing them -- especially as doing so might  churn up fears and worries about your own care and treatment.

LJ
Member

Re: June 2018 Chemo Starters

Hello ladies, sorry I've been a bit quiet recently, but been feeling a bit cheesed off and decided I didn't need to offload it onto you all. 

 

Anyway, Herceptin number 5 was yesterday and today was RT number 1. The RT was fine, the journey in less so, but it's crossed off, only 19 to go.  

 

Someone somewhere is having a laugh at my expense. I've been waiting for an oncologist appointment to come through as she wants to talk to me about bisphosphonates - well it came through for Christmas Eve!  Can you believe it?!

 

LJ

Kip Community Champion
Community Champion

Re: June 2018 Chemo Starters

Thanks CDC, yes a big shock but somehow being a child you just get on with it, the adults almost do the grieving for you, its was hard seeing my Mum upset for a very long time.  My dad died in November and has just had the 39 year anniversary.. that was hard.. he has now been gone longer than he lived... unfair.  My scariest thing was my son was experiencing strange feelings and heartbeats when he was about 9 or 10 and I really had to push it to get him looked at.   Thankfully they were understanding given the circumstances and we where referred to the Evalina Hopsital in London for tests. They have found that he has a wandering atrial pacemaker, which means his heart beats in a different pattern but is not life threatening.. hes just unusual!   So glad they took everything seriously though, I did heavily push the facts about my Dad though.

Kip

x

Member

Re: June 2018 Chemo Starters

Oh Kip That’s so desperately sad. Your Dad died when he was so young and I can’t imagine how awful it must have been for you to suddenly lose your Dad when you were just a child. I got some comfort knowing that my Dad had had a long, fulfilled life. I was still shocked at how upset I felt when he died even though he had reached a good age. It’s difficult when you know more could have been done and I can understand why you felt so incredibly let down by the medical profession, I talked to my Mum today and she admitted that she is really struggling and feeling low. I am going with her to her friend’s (my Godmother’s) funeral on Wednesday so I imagine it’s playing on her mind.

I’m sending you a huge hug and thinking of you xxx
Kip Community Champion
Community Champion

Re: June 2018 Chemo Starters

Firstly a big whoop whoop for you CDC for completing chemo, it wasnt the way yoh envisaged finishing i am sure but you have done it!  Now fingera crossed the SEs arw kind and you can putnthat nastiness behind you.  It was so sad to read about your dad too, but so glad you have nice memories too.  It seems we have a lot more in common than just BC for I too lost my Dad.  Sadly mine died when i was 9 years old.  He died unexpectedly in his sleep,  went to bed and never woke up, just 38 years old.  He had been having chest pajns and dizziness for quite some time but unfortunately back in the 70s not a lot was done, no ECG or anythjng and he was repeated ly sent away with no tests and told "its your nerves".  After he died they suspected he had an unusual heartbeat and nowadays would have been fitted with a pacemaker and been fine!  So the medical profession let another dad down!  

KipSmiley Sad

 

Xx

Member

Re: June 2018 Chemo Starters

Oh Red Rose It’s not surprising you are feeling worried but you are asking all the right questions even if your consultant doesn’t have all the answers yet. I do hope your rads go smoothly. Yours too Kip. I wonder if tha Marsden will tell me whether I should expect to have radiotherapy or not when I got to see them on Monday. It will be quite a long way to travel every day but I really don’t mind if it means less chance of b***dy BC coming back. I’d still like someone to give me a rough idea of how long they think my tumours had been growing before I found the areas of thickening which alerted me that something was wrong.

I’ve been thinking about my Dad a lot today too Red Rose. He didn’t have cancer but he developed sepsis which went undiagnosed for a while. The Gp did not take my Mum and I seriously when we said he was not acting himself and kept having fits of shaking. I think all his Gp could see was a man with dementia and he wasn’t even willing to run a urine test which would have shown up an infection. He dismissed the symptoms and eventually my Dad ended up in hospital fighting for his life. Sadly even though the Drs eventually managed to control the sepsis, he contracted pneumonia and passed away. I do think it makes things more difficult when you know mistakes have been made as in your Dad’s case with the radiotherapy. It must have been such a distressing time for him and all your family. I’m trying to focus on all the lovely memories I have of my Dad. Even in the last days, when he could no longer speak, he was able to join in with a few words of Christmas Carols he remembered. In the hospice we were known as the singing family! I’m glad I hav some positive memories even of the saddest of times. I hope you do too.

Reddi the information you have shared is very helpful. I have indeed finished chemo- Woohoo! So delighted but know I’ll still have some SEs hanging around for a while. I hope your eyes are feeling better and you no longer have blurred vision.

Wishing everyone a restful weekend. Xx
Kip Community Champion
Community Champion

Re: June 2018 Chemo Starters

I can imagine that's all you can compare your experience too.   Be strong don't let the bastards get you down!

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Re: June 2018 Chemo Starters

Thanks Kip, my dad passed away a few years ago but what he went through with his cancer and it is obviously at the fore front of my mind, while I am fighting it as it’s my experience of cancer. 9 years he fought, but loosing his sight majorly effected him mentally and physically.
Kip Community Champion
Community Champion

Re: June 2018 Chemo Starters

Hi Reddi, thanks for hormone info..xxx

Kip Community Champion
Community Champion

Re: June 2018 Chemo Starters

Morning red rose, firstly may i say well done for sticking to your guns and asking all your questions..  good for you!!  Bloody annoying that he didnt\wouldnt\couldnt answer some... the frustation at wanting answers and not gettjng any is total nightmare.  Good yo hear you are getting the dexa scan and blood tests tho.  I didnt know about your dad and send you an extra big hug for all you are dealing with and fully understand your Rad fears.. i start on Thursday and am getting jittery.  Given whats happened to your dads eyesight i would have hoped your onc would havd been more sympathetic...  Thats so wrong.  Keep on asking for answers,  you are well within your rights to question!  

Take care

Kip

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Re: June 2018 Chemo Starters

Evening ladies. Been to oncologist today and a couple of bit to update you all on. Been having a quick read of the thread and some of it ties in to previous comments. What I am doing for nail is what they would do and can’t recommend anything different. I am currently on zoledex to suppress my ovaries during chemo and radiation treatments and have my last in December as I was warned that the FEC-T could put me into early menopause. I therefore requested a blood test at oncologist which he looked gone out at me for. As I explained to him who was consulting, he can’t just sign me off from oncology because I need answers to a few thing first. 1st. Have I got into early menopause? Am I pre or post as the symptoms are ones that chemo masks as they are similar. 2nd. Again I requested a dexa scan for bone density. This is because, chemo, radiation and ovary suppression (zoledex) all cause increased risks of osteoporosis/bone thinning. And as early menopause does too, I am at very high risk in my opinion. 3rd as he is doing the blood tests for hormones, I asked him to request the cancer markers for both breast and ovarian cancer too. He looked at me shocked. As you know I am BRCA1 and I’m not taking the chance of it popping up, I would rather know if something is brewing now, which I hope not 🤞🏻 as having just finished chemo and starting rads on Monday. So blood tests will be a month ish after last zoledex injection and dexa scan appointment will be in the post. I asked him about my risk rate being BRCA1 and he could not give me a definitive answer and just referred me to the genes book but as I said to him they are lifetime risk rates and guess what I have already got it so what’s the chance of it again breast wise or ovaries? He wasn’t sure so will be looking on royal marsdens website for some answers. Also told him my fears re radiation treatment as it’s over my heart, and asked if they do a follow up echocardiogram afterward to see if any damage caused through chemo/radiation. I don’t think I have told you all think but my dad had nasopharyngeal cancer and a brain tumor, when receiving radiation treatments the mask was not right therefore his optic nerves received radiation, I won’t go into to much detail as I and others are still to receive rads, but in a nutshell, he gradually lost sight in both eyes. Oncologist answer to me was.... statistically that’s very rare and they know what they are doing. 🤔 to which my answer was, yes but it happened to my dad and statiscally I should have cancer at my age and it be triple neg! So all in all my head is spinning and insomnia is back so I don’t think I shall sleep much. Sorry for ranting ladies. Goodnight all xx
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Re: June 2018 Chemo Starters

 

@Kip From what I understand, for (most) pre-  and peri-menopausal women with ER+ breast cancer, they currently suggest either Tamoxifen for 5 years followed by an AI (anastrozole, letrozole, or exemestane) for 5 years or Tamoxifen for 10 years -- 10 years total. It sounds as though the switch to AIs at 5 years is often based on how you're tolerating the side effects of Tamoxifen; if you're tolerating Tamoxifen, they keep you on it. I wish I were getting Tamoxifen! Instead, they'll be putting me into forced menopause with Zoladex -- I think because of history of pulmonary embolism (SE of blood clots for Tamoxifen) and/or my risk of recurrence. Need to double-check.

 

In some other thread, I've seen strong praise for a product called R1R2 that in theory can be got on prescription via your GP. It pops up in a few of the BCC RT threads, e.g., herehere, and here. It sounds as though Aveeno and ilk are just as good for most people -- and @ktk provides great evidence of that.

 

@ktk Another thanks for RT reports! I've been taking notes so that I can remember all the good advice when it's my turn on the sunbed.

 

@cdc Hope your chemo today went smoothly. Was this officially your last one?

 

@Sally That's so frustrating about the trial. I hope you're able to quickly figure out a good, solid plan with your team -- trial or not.

 

Eye may be improving -- it's hard to tell as one of the drops *gives* me blurry vision and the hourly one stings. The ophthalmologist had warned me of this, but I wasn't expecting blurry vision for hours and hours. Less than ideal for doing work.

Kip Community Champion
Community Champion

Re: June 2018 Chemo Starters

KTK - thanks for the advice regarding Rads, I'll be out at the weekend stocking up on my creams!  Thanks for explaining about the biosphates stuff.  I am pre-menopausal so haven't been told about it then.

  

CDC - interestingly I didn't have a scan/blood test or anythign to find out if I am pre or post they just asked me if I was having periods before chemo and I was (I have only had one since though) and they just said "you are pre-menopausal"... not exactly scientific is it.  I wonder what happens further down the line, do they then check to see if you are now post meno... or just keep taking Tamoxifen?   More puzzles to work out I think.  Its good news that you are having the last chemo adn to be finishing earlier than expected.  Hopefully you'll get to feel better for Christmas and can start the new year thinking straight about the operation?

 

Sally - sorry to hear you can't take part in the trial, but good that they are looking at other ones for you.  

 

Reddi - I cannot imagine waking every hour to apply drops... thats worse than having a new born baby!  Hope the eye is improving today?

 

I'm still feeling stiff and achy although possibly a little bit less?   I have been walking 3 miles an evening to see if that helps and taking the bananas, zinc, magnesium and cod liver oil and sitting with a heating pad on my hips which feels lovely!   Also managed 10 minutes hoola hooping today too just to get the joints moving.. I'll try anything.

My poor OH has had to participate in a "Cancer Awareness" course at work yesterday (not sure why they are doing it) and he was part of a phone conference where people from the Civil Service were chatting about experiences of cancer..  He came home and said everything was fine and quite intersting to hear others talk about their chemo etc until a lady came on the line and said she had had breast cancer and then had secondaries... poor love said he had to hang up as couldn't bring himself to listen to it.  Can't believe they picked him to participate at this time!   However he now believes chemo brain is a thing!   Said several people talked about it and how long chemo takes to get over... not just me then!

Anyway ladies, have a lovely day

ktk
Member

Re: June 2018 Chemo Starters

cdc I didn’t have a scan or anything. Bisphosphonate was part of my original plan as I am post menopause!! Kx
Member

Re: June 2018 Chemo Starters

So sorry to hear of all the ongoing issues despite finishing chemo.
Sally it seems particularly unfair that the
Letrozole is causing hair loss after you persevered with the cold cap. Im interested to hear what your team say about radio, I thought you could only have it once in one area. My Mum had it both times she had BC but only because the second time they found a tumour it was in the other breast so she could have radio to that side. I’m still waiting to find out if I’ll be having it too. My surgeon at Barts thought it likely but I have been signed off from Barts altogether now so will wait to hear the Marsden’s view in Monday, I do feel a bit cast adrift as I’ve been attending Barts for 10 years! Feeling nervous about my transfer but pleased I’ll be under a team who can look at my case with fresh eyes.
I do have to go in for just one more chemo tomorrow. As I’ve been on an 80% dose of the weekly Paclitaxel my onc and I agreed it would be worth having another cycle then I will have had the equivalent of 3xT which I believe is what many of you have had. It means finishing chemo a month earlier than planned thank goodness. I’m feeling really grotty today. The fatigue has hit me so hard this week and I feel under the weather in general. Been taking my temp regularly but it’s fine, My OH has had a stinking cold so I’m trying to stay out of his way.

Reddi so sorry you ended up back at the hospital on Thanksgiving. I do so hope your eye issues are sorted out soon.

ktk Great you’ve nearly finished your rads. It’s helpful to hear your experience and to know what to expect. I do hope you can have a restful night and the Piriton is working! Did you have a bone scan before starting rads or do they give bisophosphonates to all post menopausal women? I’m presuming I’ll have some sort of hormone test to see if chemo has put me into menopause, which is what I suspect.

Jean thanks for the TUG info-very helpful,
I was told I only had two options for reconstruction - implant or tummy DIEP but maybe the plastics team at the Marsden will have a different view.

Kip Hope you haven’t felt so achey today, I’ve been eating bananas to see if it helps. To be honest I think my body is just saying ‘I’ve had enough’ so hopeful an early night will help me. How is the drive coming along?!! Finished I hope.

Take Care everyone xx
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Re: June 2018 Chemo Starters

So I had a call today to tell me that because of the DVT I can't take part in the MonarchE trial. I then had another call to see another oncologist to see if there are any other trials I can do and also discuss my options regarding radiotherapy which I was told previously I couldn't have again, it seems I may end up having it again.

In the meantime definite scalp and baldness now coming , 5 weeks after finishing chemo.
ktk
Member

Re: June 2018 Chemo Starters

Hi Kip, rads have been a walk in the park compared to chemo. I have a bit of an itchy boob but have taken some Piriton for that. I use Doublebase and E45 cream and Aveno in the shower. Last session tomorrow 😁😁😁😁

The bisphosphonates are to increase bone density so are given to post menopausal women. They increase calcium uptake so the Adcal tabs help that. The worst SE is osteonecrosis of the jaw, which is why you have to have any dental work done before you start. I felt a bit achy yesterday, as if I had flu, but am fine today! Kxxx
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Re: June 2018 Chemo Starters

When I had to do through the night a few years ago, I set an alarm to go off every hour. It SUCKED. My OH and I were not pleasant people.

Kip Community Champion
Community Champion

Re: June 2018 Chemo Starters

Reddi you poor thing, that sounds like a nightmare, for a mintue i was wondering how you do it every hour through the night!  Hope that clears up soon.  Xx

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Re: June 2018 Chemo Starters

The different approaches to bisphosphonates are very confusing. It seems that even though there are national guidelines, each trust/hospital has a fair bit of leeway in deciding how to provide them. Or maybe some of the decision of infusion vs tablet is based on age?

 

Have spent my Thanksgiving morning at hospital. I'd been getting some blurry vision and discomfort since Sunday evening, and the oncologist had asked me to ring if that happened, so that they could arrange for an ophthalmologist to check my eye with respect to the shingles. There were no ophthalmology appointments open, and thus I was ushered to A&E and the urgent eye clinic. Yesterday I managed to see the triage nurse but wasn't able to see the doctor before they closed for the day. Good news: I don't have shingles in my right eye. Bad news: I have uveitis (inflammation of the middle eye) and increased eye pressure. In my pharmacy goodie bag: another week of 5x/day antivirals and 4 different eye drops, one of which has to be dispensed once an hour for the first 2 days, and then once every 2 hours for the following 5 days. (The others are 2 times per day -- easy as pie.) Just glad i don't have to do the hourly drop once an hour including overnight --  I had a corneal ulcer once that required that regimen, and the sleep deprivation was worse than chemo. The inflammation might be related to immune suppression, the HER2 drugs, or my contact lenses, though they don't think it's the last as I haven't worn my lenses in a week and a half. On top of it all, I do indeed have an unrelated sty on that eyelid. The chemo, it gives and gives! And my body is getting tired of it. Hurrah that I don't have any more cycles! 

Member

Re: June 2018 Chemo Starters

Hi ktk. Yes Im on a daily tablet for 4 years. I havnt started it yet as having dental treatment for bone density in my jaw. The iabondric acid can cause jaw necrosis so getting things sorted (hopefully) first. No one mentioned 6monthly infusions or vit d. Will ask onc about it. Hope you are feeling less achy today.
Kip Community Champion
Community Champion

Re: June 2018 Chemo Starters

Hi Ladies,

KTK - how did you find the Rads?  I am starting next week.  Any side effects, which moisturisers did you use? 

Just curious - what are all the infusions, jabs for?  I've never heard of them, should I be expecting some?

Kip

x

Member

Re: June 2018 Chemo Starters

Really? I was diagnosed in January and that was delayed due to hospital errors so I'm well outside that.
ktk
Member

Re: June 2018 Chemo Starters

Hi Sally, thanks for your reply. I think I read somewhere that they need to start the treatment within six months of diagnosis. I was outside this timeframe, and am not sure it is possible to meet that deadline!!! Keep me updated! Kxx
Member

Re: June 2018 Chemo Starters

Happy Thanksgiving Reddi! X

Member

Re: June 2018 Chemo Starters

Hi ktk,

I'm meant to be having the zometa infusions but haven't had any yet. Don't even know where I'm having it cos I was referred for a drug trial and was meant to have it at Guys but my participation in the drug trial is in doubt as a possible si de effect is dvt and as I've had one before they may not be able to lete take part, which will mean referring me back locally for it.

In the meantime, now 5 weeks after chemo finished and I'm losing hair like nobody's business. All since I've started the letrozole.
ktk
Member

Re: June 2018 Chemo Starters

Hi Val. Are you taking the tablets daily? I have an infusion every six months, just to remind me of the joys of chemo 🤣. I also have Adcal, calcium and vitamin D tablets to take. Very achy today but I’ve just had a nice bath which has helped. Kx
Member

Re: June 2018 Chemo Starters

Hi ktk. I have just finished rads and must say I am glad its over. Have onc app on 14/12 and he has prescribed ibandronic acid/bondorat but havnt started taking them yet. Hows yours? Val
Member

Re: June 2018 Chemo Starters

@Feenix Thanks so much for the link -- so helpful. I'd tried searching the forum but must have done something wrong in constructing the text string.

 

In case it's helpful to others, here's the direct link to the TUG discussion. 

 

A bit discouraging to see the long wait times for the procedure, but I'd half expected this once I knew it wasn't offered very widely. Who knows, maybe my BCN is wrong and I have enough tummy for one full-breast reconstruction. And if they get clear margins for the lumpectomy on the other breast, then that could be balanced with lipofilling. Once again, I need to head over to the surgery threads...

ktk
Member

Re: June 2018 Chemo Starters

Morning ladies. I’ve been a bit quiet as do the daily RT run, which finishes on Friday 😁😁😁😁. I was marked up for my three targeted treatments yesterday then went for my first bisphosphonate infusion. First go without my Picc, which was taken out after chemo. No problems though. I’ve woken up very achy this morning, almost flu like. Not as bad as chemo, but I hadn’t expected it!! Anyone else on bisphosphonates? How have you found them?

Love to all Kxxx
Member

Re: June 2018 Chemo Starters

Reconstruction TUG using 1 02 thighs 

This is an old thread about TUG

Kip Community Champion
Community Champion

Re: June 2018 Chemo Starters

Hello all,

Thanks for the nail advice Red Rose, I think mine may follow suit some time soon as they are definately going all white and looking extremely weird.   How are you feeling otherwise?

Sorry can't offer any advice re the surgeries, but I do remember being told about the butt/thigh operation.  My BCN showed me a port folio of photos of ladies who had had various reconstructions etc but I don't remember ever seeing photos of the sites the recons were taken from, thats a very good point!

I have spoken to my ONC nurse yesterday regarding the aches and pains I am suffering at the moment, and she said they are almost certainly a SE of the T part of chemo, its very common and not a lot you can do for it except ride it out.  She did, however, suggest taking Zinc and Magnesium supplements as the chemo destroys it and that can cause you aches and pains.  She also said up your potassium too, so to eat lots of bananas.  I'm going to try these and see if that helps... watch this space... (oh and you can take Paracetemol if you really need it).

CDC - had forgotten about Epsom bath salts. will send hubby out for that too... worth a try. 

Well the sun was out here briefly but it now looks so dark and rainy.  I have men trying to lay a new driveway for me and they keep having to dive into the garage and drink tea!   They've been 5 days now and still not finished... pray for sunshine..

Kip

xx

 

Member

Re: June 2018 Chemo Starters

Ps. Belated Happy Birthday 🎂🎉 xx
Member

Re: June 2018 Chemo Starters

Hi ladies. Just off to bed, but thought I would answer cdc, and then catch up with you all tomorrow. I have lost 3 nails now and the rest will be following shorty. Chemo hotline suggested rubber thimbles 🤷‍♀️🤦🏼‍♀️😂. But I have found that a tape I got from hospital when having zoledex injection works best as you can tear it to get it to the right size. Have been sticking the nail down to prevent catching it and once they off it’s so much better. Doctor wasn’t much help either when asked him. For now clean daily and cover with transpore tape to keep nail on. Going to ask at oncologist on Friday, so if find something better will let you know. Don’t force them as bleeding or open wounds can lead to infection and check they not red, sore, weapping or hot. Remember to keep eye on temperature 🤒 too. Hope that helps 😘 just what I have been doing xx
Member

Re: June 2018 Chemo Starters

@cdc I have been looking at SGAP (glutal artery/buttocks) and TUG flap (thigh) as I don't want to lose back muscle and may not have enough tissue for full tummy mastectomy (definitely not enough for two). The microsurgery techniques are quite specialized and are only offered by a few facilities, as far as I can tell. I would hope the Marsden is one; they must at least partner with a plastic surgeon with experience doing it. One big issue: it is very difficult to find images of post-surgery scars at the donor site or patient reports of recovery -- I think SGAP might be better for me on the latter front, but maybe not. It is quite frustrating.