Kip
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Registered: ‎27-04-2018

Re: June 2018 Chemo Starters

Hi Sally, mine started to grow when I was having the 2nd lot of Docetaxol, which was about August time.   Since finishing chemo it has just grown quite quickly.  I have been using the Lush "new" soap bar which Shi recommended and was even using it on my bald head!  Not sure if thats helped or not. I did have very thick hair before all this and it grew quickly so perhaps thats why.  I think from research everybody's grows differently and at different times.  Did you have FEC-T?  Sorry can't remember? 

I lost the tip of a nail today, just the horrible white bit, so hoping the rest will just grow out now.   Must try to paint then tho as they look like a mouse has gnawed at them.

Kip

xx

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Registered: ‎03-04-2018

Re: June 2018 Chemo Starters

Your hair looks good as it is Kip. It suits you.

How long after chemo did the growing start? I'm over 6 weeks out and so far, nothing. Lost more and none of what I lost has come back. I've had no regrowth at all.

Kip
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Re: June 2018 Chemo Starters

Wow hair chalks hadnt thought about that..  im As white as Philip Schofield!!  mynails are still in tact bbut the end white bit got progressivly lower but thet dont hurt, imI just cuttjng them very short  and hopjing  to grow out the ridges and nastiness.  Heres an update in the hair....

20181210_182118.jpg

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Registered: ‎29-06-2018

Re: June 2018 Chemo Starters

@Shi Fab idea. I have bizarro greyness -- front right and crown, with rest dark. I think it is my natural, pre-chemo pattern, but like @ktk I have been dying for a long time... In my case, something like two decades? So this is my first introduction to it. Ah, vanity. Chalk would provide a fun change for the holidays -- probably NYE for me, as it sounds like I'll still have drains on Christmas and Boxing Day. Festive! And hard to accessorize. Maybe a green gift bow?

Just had my first Herceptin by injection -- 13 to go! (Finishing 12 Sep.) It was so easy after the past 5 months: a quick 5 minutes into the thigh, then an hour's observation. Not chemo, but given in the chemo day unit (and the targeted therapies forums don't seem to be organized in the same way).
Shi Community Champion
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Re: June 2018 Chemo Starters

Hi Ktk I put hair chalks on my hair, just wet hair and rubbed in didn’t seal with straighteners as hair wasn’t long enough, got mine off Amazon 💕💕✨✨Shi xx
ktk
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Re: June 2018 Chemo Starters

Hi all! I am about six weeks post chemo and my nails are not looking so good. Although they are in tact the unconnected bit at the top is creeping lower. I have just had them painted bright red which I hope will see me through to Christmas! Better news on the hair front. I now have a good covering of fluffy hair, about a cm all over. Unfortunately it is grey!!! It probably was before but I dyed it!!! I would like to put a bright temporary dye on for Christmas but everything I have read says wait six months. Anyone else colouring their hair yet? Love to all xxx
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Re: June 2018 Chemo Starters

Thanks, @SallyG63! Just spoke to my nurse and she is going to check on it.

@RedRose I've been thinking of you. Hope your wedding planning has been fun and smooth --
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Re: June 2018 Chemo Starters

HI Reddi,

I had an ECG as part of the pre surgery assessment both this year and when I had cancer previously in 2006. I thought it was standard before a general anaesthetic. I only had it before the 1st surgery though this year, not the 2nd but they were only 5 weeks apart.
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Re: June 2018 Chemo Starters

[ Edited ]

A quick fingernail update -- specifically for @Georgie Gee, who asked some time ago, around when her chemo ended. I know her oncologist helped to trial Polybalm at her hospital. (How are you, Georgie Gee?)

 

My Polybalm experiment wasn't perfect, since I got my tubes about halfway through my first docetaxel cycle, and typically only applied it 1x/day (rather than 2-3x as recommended). I topped up with cuticle oil, especially to my fingernails, as this was slightly more convenient and cost-effective for me. Because of my elevated liver enzymes between FEC and T, I also never had a 100% docetaxel dose -- instead I had 75% x 4 cycles, with the 4th cycle added for my HER2 antibody infusions.

 

In any case, my nails seem to be surviving well, on day 24 after final cycle. Still a chance I'll lose some -- right thumbnail, in particular, is sore -- but so far, so good. [If you're curious for more details, see my post in the Dec '18 chemo starters forum. Didn't want to post too, too much here since I know quite a few of you are struggling with your nails. Smiley Sad]

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Re: June 2018 Chemo Starters

Keeping your feet up is a good idea  Reddi- I’ve probably mentioned it before but I had to moisturise my feet without rubbing too hard then wrap them in cling film before putting them up!  It did seem to help but I was meant to do it three times a day which was impractical!  

I remenver - your chemo was new-adjuvant wasn’t it so Its good they are getting on with surgery now.  

I really will be thinking of you,  I will  lose my nipples on both sides as the remaining cancer cells were found underneath the one on the right and they have to cut around where my previous scars are anyway so the nerves won’t survive. I don’t remember having an ECG before surgery but I did have one prior to starting chemo.  I really will be thinking of you on 13th.  Take Care and hope your hectic week is not too stressful xx

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Re: June 2018 Chemo Starters

@cdc I don't have any more chemo -- just HER2 antibody injections -- so (more) self-care is probably what the doctors will order for my feet. I have to be at the chemo day unit for my injection tomorrow, however, so I'll have a little chat about it.

Also need to chase up something regarding my pre-surgery assessment: Before my sentinel lymph node biopsies in June, I was given an ECG, but not this time. I wonder if this was an oversight -- as Mx is a major surgery. Plus, my last MUGA heart scan was 25 Sep, so I have had 3 doses (soon 4) of Herceptin since then, and Herceptin can affect the heart. I'm probably overthinking it, but I think I need to call my new BCN in the morning to sort it out. Did any of you have an ECG before surgery?

On timing: because I haven't had any surgery to my breast just yet, my new surgeon wanted me to get in theatre within 6 weeks of my last chemo dose, particularly as the left IDC lesion has only just held steady this whole time, so getting it out, as well as the right DCIS, is a priority. She's on annual leave from 17 Dec til 8 Jan -- so 13 Dec for me 'tis.
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Re: June 2018 Chemo Starters

Wow Reddi. Didn’t realise you’d be having surgery so soon. Sounds like you are very clued up on all the options. I do so hope you get the very best possible results.
Unfortunately the blisters sound like they could b chemo related- My onc was surprised that I got hand-foot syndrome so soon (my toes/feet started blistering about 48 hours after the first cycle of T) as it’s usually associated something you get towards the end of chemo so I would definitely get your feet checked out. So frustrating that your appointment was changed. I rang the chemo nurse when my feet blistered and was told to go in. That actually stopped the docetaxel immediately. That was when I got chambered to Paclitaxel. Do you still have one more cycle? I was told I need to wait at least six weeks after chemo before they will do surgery. Keeping Christmas simple sounds like a good plan after such a busy week of appointments and surgery Reddi!
Linda That’s an interesting question. I don’t think I’ve had a definitive answer but the consultant didn’t same too concerned at the thought I might need Radio after my MX and recon. It would only be in the right because at the Marsden they usually advise radio if the tumour is 5cm or above, I have been told radiotherapy would be less of a problem if I have a reconstructed breast using my own tissue, The open evening sounds very helpful. I wonder if I'll be offered something similar if I need radio.
Kip great idea to take the tamoxifen at night. Think I’ll try the same. I’m havimg hot flushes anyway and much as I dislike them I know what to expect.
Aargh got to say night, night as we have a new house rule - no screens for an hour between 7 and 8 pm!
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Re: June 2018 Chemo Starters

 
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Kip
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Re: June 2018 Chemo Starters

Great news Reddj, ill have everything crossed for good results all round so you get to keep the nipp!e!!!  Youve made me intrigued...  Whats the no present plam?  No presents for anyone orminimal or what??  Sohnds interesting...  Ive not finished my shoppjng as yet so some might not grt one anyany!!!  A few years back my SIL and brother and myself and OH all decied to only spend £5 on eaxh orher,.... Its actually good fun seeing what you can get!  

Sending festive wishes to you too 

Kip

Xx

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Re: June 2018 Chemo Starters

[ Edited ]

@cdc Brava on speaking out at the conference. I am glad to hear that you are hoping to participate in future panels -- even while you are still undergoing treatment. 🙌

 

And... 🥁🥁🥁🥁 My surgery date has been set: this Thursday, 13 December! (Assuming my bloodwork shows that my immune system is adequately recovered.)

 

I am going forward with WLE on left and nipple-sparing mastectomy on right with immediate reconstruction using a prepectoral implant. If the tissue sample from the nipple on my mastectomy side comes back positive for cancer, then I'll have the nipple removed but keep the areola and the implant. If I'm one of the one in ten whose implant doesn't take, then I'll have to have it removed; there are a range of options at that point, and I've decided to wait to consider which option to take only if I face that situation. The left side is trickier, should the surgeons not get clear margins: my gut is to do a re-excision rather than go straight to mastectomy, but I may feel differently on the other side of surgery. So I'm going to wait and see for that, too. Right now, the plan is for radiotherapy on the left only, but that might change when we have the results of the pathology report after Christmas. Best news: I'll only have drains on the mastectomy side. Hurrah!

 

@Kip et al. I'm not sure when I'll start hormone therapy. Soon, I  hope. Although the side effects of tamoxifen etc. are daunting, hormone therapy really is the best treatment for reducing risk of recurrence if you are ER+. (As far as I know, I wasn't tested for hormone levels before starting chemo either.) I was told early in the process that the newest research is suggesting that extending hormone therapy beyond 10 years probably makes sense for women who are younger when diagnosed; but 10 years is a long time, especially in medical research. Who knows what new studies will find about the mix of tamoxifen versus AIs, or what new and  improved drugs might be developed. 

 

@cdc When you got the blisters on the soles of your feet, at what stage in your cycle did they show up? I strangely developed blisters across the ball and heel of both feet on Monday (day 18 of cycle 7), worsening and sliding up the side of the foot that has some ground contact on Tuesday, receding slowly from Thursday. It seems so late to be getting a brand-new side effect, but I actually did less walking in cycle 7 compared to earlier cycles, and I'm not one to get blisters on my soles. I've been trying to keep my feet elevated and moisturized, which may be helping. I'd planned to ask the oncologist and/or chemo day unit nurses about it -- but then my oncology appointment got moved from this past Wednesday to this coming Wednesday, and somehow, nobody wrote my prescription for my first Herceptin injection. So my CDU appointment for that had to be moved to this Monday. By the time I see anyone, most of my blisters may be calluses.

 

Looking forward to the busy week ahead at the hospital: Herceptin injection Monday, more bloodwork Tuesday, oncology and ophthalmology Wednesday, surgery Thursday morning, discharge (hopefully) Friday evening.

 

Then 🎄! I overdid it this week and got a wee tree with my blistered feet, since that and some roast chicken thighs will be our celebration this year. (OH isn't a cook.) We've decided this year is the year to finally try our experiment of no gifts. (My parents and SIL have not agreed to this experiment, and it didn't make sense to insist on it.) There will, however, be chocolates. 

 

I know many of us will be super busy over the next couple weeks, so taking the chance now to wish y'all a warm & wonderful holiday and an abundance of good health & happiness in 2019!

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Re: June 2018 Chemo Starters

CDC Did they say if the reconstruction would be effected by radiotherapy if you need it? I start radiotherapy on the 17th for 4 weeks. As my tissue is dense it should have less effect but probably not the case if you have had reconstruction. I went to an open evening so saw behind the scenes of the radiotherapy department. Glad that you are happier now with how things are progressing.x

Kip
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Re: June 2018 Chemo Starters

Hello Clare, glad to hear you are moving forward in terms of next steps.  Intersting that you had a blood test to ascertain your menopause status...  I never had anything!  I know how you feel about taking the tamoxifen. I stared at the box and read the leaflets over a d over before committing.  I take mine at about 9pm as i tthought if any major side effects i may sleep through them.  So far i am gettjng the odd hot flush, probably no more than i was during chemo, odd one during the night but not extreme.  I also have the aches and pains which can be attributed to chemo SEs but also menopause and tamoxifen.  Ive read lots of threads on here where women are having the aching since being on tamoxifen so its hhard to work out what is causing it.  I am taking magnesium and zinc supplements as advised by my Onc nurse and the aches are definitely improved.  Apart from that no other problems so far.  I have read that some people find different brands effect them differently so its a bit of a wait n see i think. Enjoy your nights out before you start then uou can enjoy them without worrying.

Kip

 

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Re: June 2018 Chemo Starters

Hi Everyone
I had an appointment with the medical oncologist today so interested to see how everyone is getting on with various treatments. I still won’t know if i’ll Have radiotherapy until after my op it seems. Sorry to hear you’re still achey and stiff Kip. Hope the seroma is starting to go down. I can understand your feelings being back at the hospital regularly. I’ve had a few appointments at The Marsden and it does feel like I’m back on the hospital appointment treadmill although it’s good to have a change of scenery and interesting to see how treatment differs. Great that you’ve joined the Breast Density Matters Facebook page. I’ll see if I can find you! My oncologist today was at the same conference and said ‘good for yiu’ when I told her the reason why. She knew all about dense tissue masking the tumours but even she was shocked that when comparing my MRI images with the mammograms taaken the previous week it is still impossible to see my tumours on the latter.

Sally How frustrating that none of the prosthesis in stock were right. I do hope that you are seen again quickly and a suitable one is found. Also that you get a mammogram soon. Talking of things being overdue my previous hospital should have responded to my complaint by now or let me know that they need more time so I am going to have to chase that up which is a pain. Grrrrrr!

ktk I hope the Piriton is working. An itchy boob does not sound pleasant. Are you getting stiff after radiotherapy? Is it partly because you have to stay in an awkward position? Glad you didn’t get the tiredness.

Shi The Conference was an amazing experience and I was glad to talk to a number of people who were interested to hear my story and recognised that there is a real need fo educate people about verse dense tissue. If more effective screening was available there would be more chance to find tumours at a smaller and less advanced stage so less radical treatment would be needed.

Hi RedRose. How are you getting on with the radiotherapy? I hope you have been SE free.

Reddi Have you got a date for surgery yet? Been thinking of you. Looks like I’ll be having mine mid to late January. The Marsden are offering me either a tummy DIEP or the TUG procedure using the inner thighs, Got till 19th December to read up on both ops and decide which will work better for me. Having said that I will have a CT scan a few days before which should confirm which area has the best bloody supply which will obviously helps with the decision.

I came home from the hospital with my first months supply of Tamoxifen. I keep looking at the box. My oncologist says that they usually try women on tamoxifen for a couple of years first in my situation - early fifties and pre-menopausal before chemo. My blood tests showed my hormones look as though I’m in menopaise but because I’ve only just finished chemo they are unreliable. They usually test hormone levels before chemo but Barts didn’t do this. They’ll retest in a couple of years if not earlier and I might go on to Letrozole. She says whatever I am on I’ll be on it for ten years if not longer as so,e of the more recent research is suggesting ER+ women should keep taking it,

I’ve also been asked if I’ll go on the Monarch E trial-using a drug which is already used for secondary cancers to see if it is helpful in preventing recurrence in women with primary BC. The side effects all look rather grim, I do like the idea of helping with research but I think my body might need a rest! I think there are some discussions on this,thread about the trial so I’ll see if I can locate them.

Hope everyone has a good weekend. I’m wondering about starting the tamoxifen on Monday rather than tomorrow as I have two Christmas Parties to go to. I’d like to be side effect free for those at least. Any advice or suggestions gratefully received.

Xxx
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Re: June 2018 Chemo Starters

 
Kip
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Re: June 2018 Chemo Starters

Hi KTK, so far so good with me, only had 6 so far though.  No soreness or itching but my arm on that side is very stiff and gets quite tight, so interesting you say you've had to up the stretching too.   Sometimes I get tightness right down to my wrist on that side and have to really stretch it out... I think I am going to pop into the Breast Clinic in Monday after Rads to see if someone can check it out for me, the seroma seems a bit larger too and that was really disappearing before rads started.   Otherwise its ok, bit tiresome and I hate being back in the hospital amongst all the signs for cancer etc... just want to be out in the real world and trying to forget (wishful thinking).   I'll check I have some piriton ready in case I need it then.

 

SallyG - what a disappointment with the prosthesis.  I'm going to attempt to get one after xmas when Rads are complete, although I am quite comfy with the Knitted Knockers but would like to see what a proper one looks/feels like.   Frustrating for you to be over looked for the mammogram too, bloody nightmare, just what you don't want.

 

Kip

xx