LOVELY to hear from everyone So glad everyone seems to be doing okay. LOL about the hair coming back EVERYWHERE! I seem to have everything except eyelashes and you know where! My hair is coming back iron grey rather than the chestnut with some grey that it was before - but I'm so glad it's coming back that I like it!! I've the oncology appointment this afternoon so I'll find out when/ if I can start radiotherapy. I wonder why it is needed if we get clear margins (I can't help worrying all the time). I've still got an open wound on my reconstruction which I wonder will mean delaying the start of the radiotherapy. I saw the most awful picture of a girl who'd had the same recon and who was red raw from collar bone down to under her breast after radiotherapy - so that's scary. I wonder they carried on bless her. So it was good Debs to hear that you found it a breeze. Fingers crossed.
Has anyone else still got chemo side effects? I still get the hot flashes (and sounds like these will continue once I'm on tamoxifen) and also some slight vertigo at night. I'm now two months post chemo. I also am not sleeping well either Mel - so maybe this is normal post chemo. I've also been trying to get some fitness back - although nothing so keen as cycling! I've no longer got the horrible leg pain I had on Tax so going for walks a lot more.
Stelwah good luck with your results - have you had these by now? Hope all is going well in your healing too. Will you have to pay for private genetic testing or will NHS give you this? Seems tough if the former after everything else.
Hi all, im doing ok ...finished rads few weeks ago now. That was a breeze compared to chemotherapy for me personally. I have my herceptin infusion today and continue to have that every 3weeks. I started tamoxifen in august and so far it is treating me well. I do get the hot flushes but had begun getting them on chemo. As I had mastectomy and nodes removed earlier in the year at the moment all thats left now us regular check ups, heart scans and mammogram in january. Also want to start discussing reconstruction . Have energy and eye lashes etc back now and I have hair on my head, about grade 2 all over.Still wear my scarfs as had long curly hair before and feel not ready to reveal my short hair yet ! All the best Ladies x
Not much action on this thread anymore - which is understandable I guess. But I still wonder how everyone is doing.
I had my mastectomy and immediate DIEP recon on 21st August and am doing well. The new boob takes a bit of getting used to and of course my other one is about five feet lower down my body!!! Hilarious. But who cares because the tumour is gone (d.v.). My breast surgeon said she got good margins on the tumour and in fact there wasn't much left, so considering the huge original tumour size I'm pleased. I had 31 lymph nodes removed and 3 were positive, which I guess I expected. I will hear more when I see my oncologist at the end of the month.
I'll still have radiotherapy to go. Anyone else still waiting for further treatment like radiotherapy?
Chemo effects are gradually wearing off. I still have numb feet and fingers but the leg pain is no more which is great. I've no eyelashes but the leg hair is back (bummer). I never did that shaving of the head thing, and had a few strands left before surgery. Weirdly as my new hair has started to grow these have come away and I've lost eyebrow hair now which I hadn't before. Odd this long after last chemo but nothing I can do about it.
Would love to hear how everyone is doiing
Wendy - good to see you popping in here too - but rubbish reason that you too have to have extra chemo.
I am sorry not to have been on for a while. The anxiety of everything led to me ending up in a really black place, very anxious. Anyway we went away for a few days to the sea and had a really lovely break - and great weather. I even managed a few swims in the sea because we found a beach where we could park nearby and I could get into the sea easily (my legs are still quite bad as a result of the chemo). We cut short our week away and came back for my extra chemo which I had a week ago now. My neutropenic count was 8.3 before the chemo - the best I've ever had (usually 2.8 - 4.1) so I'm really glad we went away.
I did ask about surgery at another hospital but lists are all full - so had the extra chemo and am now hoping to recover well before surgery in three weeks time (21st). I'm having a DIEP - anyone else having that?
Can I ask you ladies does anyone else feel giddy/dizzy as a result of chemo? I found a 2013 thread on here about this so I'm hoping that this is a side effect rather than anything more sinister.
I'm not having luck on the hair front - still no signs of anything coming back which is great for the summer legs but not so great otherwise!!! I'm also now wearing these condom type things on several fingers as my nails have started to come off (right at the base). My chemo has been really strong so I'm not surprised but it's yet another thing. On the positive side since the extra chemo I can't feel any tumour at all.
Stelwah - I'm so glad the liver lesions may be something else entirely - I really have everything crossed for that biopsy for you. xx
Wendy - hope you see this and can let us know how your extra chemo went.
Hello Lollymum - remember me? We chatted when you first joined the forum.
Anyway, I just read your post and wanted to offer some suggestions here.
I really do sympathise with the surgery situation. My mastectomy was booked for 4 weeks after I finished chemo (2nd April to 1st May), but then I got notified that my surgeon couldn't make the 1st May so it was rebooked for 9th May. They said they couldn't leave it any longer - same reason as with you - the tumour might start growing again.
So, as I see it, you have TWO options here - either have that 7th dose of chemo OR ask if the op can be done at another hospital, which you have the right to ask. I have no idea if you have any other hospitals nearby, but surely this is worth considering to avoid the hassle of having more chemo?
Anyway, I'm going to keep reading your updates now to see what happens, and I wish you all the best of luck with this. So frustrating!
By the way, I've now finished radiotherapy and started Tamoxifen last week, and I'm feeling great x
Hope all is going well for you all.
I seem to be living in some kind of nightmare since "finishing" chemo on 3rd July. From the very beginning my team at my hospital said I would have to have a mastectomy and reconstruction following chemo. I've had a good response to chemo to shrink the tumour (Tax). However the plastics team at the hospital did not book me a slot within the 4 - 6 weeks after chemo finishes. So now the earliest they can fit me in is 21st August - which is 7 weeks post chemo. My oncologist has fumed and raged as have I but nothing doing other than 24th July which my mastectomy surgeon says is too close to chemotherapy and I'll get rubbish healing.
Because of this total incompetence on behalf of the one hospital department failing to book me in I now face awful choices. Straight mastectomy with no reconstruction on 11th August, or stick to 21st August and risk the tumour growing or - and this is today's development - have a SEVENTH chemo (and I'm on the highest dosage possible) to ensure my tumour doesn't come back before surgery.
I'm also hoping mad because we were due to take a much needed family break from Saturday - one week by the sea in Dorset to try to heal our family after such a stressful year and now because someone couldn't be arsed to book me in properly we have to cancel and I have to go through yet another round of chemo. I just don't know what to do. My family are tired and miserable; I'm so tired and my legs are so painful I can't walk far - so what another chemo will do to me is anyone's guess. I just feel like I can't go on anymore.
Has anyone else with grade 3 been given a longer gap than 6 weeks for surgery. WOuld love some advice ladies. LM
Stelwah - you're so positive - inspirational. So relieved for you that the lung scan was clear. Good luck with the other scans. I think I'm going to ask about the injections to shut the ovaries down too - sounds sensible.
Mel - I'm exactly like you - starting to really really dread the surgery. 8 hours!! I've already seen my breast surgeon, and she's happy to do either op my choice, so I've a provisional straight mastectomy on 11th August. Then I see the plastics surgeon tomorrow morning to discuss that option. I've not been offered the implant option.
It's true that radiotherapy runs the risk of distorting the shape of the reconstruction. But they do do lots of these none the less. I am not sure why. I'll ask that question I think. I hadn't thought about the preservation of enough skin to do the reconstruction - that's a really good point.
Meanwhile my final chemo is a week away. I have to say my legs are driving me batty - does anyone else's legs feel achey (as if they've climbed up 40 flights of stairs) all the time? I've put on some surgical stockings I had left from the hospital to see if it helps my poor numb feet - seems to be working.
Must go and pick up my daughter xxs
Am glad you are feeling a little better Stelwah,wishing you all the best. Lollymum are you not having rads? I was adviced against reconstruction untill sometime after rads so had to have my mastectomy first.I know all cases are different though.
Hope everyone is doing okay - we're nearly through the chemo which must be good news.
Stelwah you've been on my mind so much over the last few days - frightening news that you've lesions despite being on chemo. Fingers crossed (and everything else) for postives to come out of the MDT meeting. I hope they're prioritising you xxx
I've had some good news today in that I saw my surgeon for the first time since starting chemo. She's thrilled with how much my tumour has shrunk and says it is now totally operable (and it wasn't before apparently). It's disappeared from my lymph nodes and the tumour is a third (approx) of its original size so she'll be able to do a safe mastectomy.
I can't decide between the straight mastectomy get all the cancer out - or the mastectomy followed by the reconstruction in the same operation which is on offer. Part of me just wants to have the mastectomy then get on with my life. The bonus of the reconstruction is that the scaring is less than the straight mastectomy. But I'm really scared about the 8 hours of anaesthesia I'll need if I have the plastics and mastectomy in the same operation. ANyone any words of wisdom/ experience to offier?
Hi - Re the head painting - what about little rabbits? Then you can say they look like hares (hairs) from a distance (ha ha!).
Well I'm about to have chemo 5 tomorrow. Another one ticked off. The hand I'm pleased to report is much better and I have new skin which is much less angry looking. The downside is that my oncologist is adament I can't have chemo in that hand, so chemo will have to be on my cancer side. Apparently it being on the cancer side is much less of an issue as I haven't had surgery yet.
I have had the most awful aching hips and legs the last couple of days - which is odd this far on in the chemo cycle. And numb feet. All chemo side effects as I'm on the strongest dose of the strongest chemo apparently.
The good side of that is that my tumour has SHRUNK - and is nice and soft now. I'm so pleased as I've had no shrinkage much until now as you know. It's still not much but it's gone from 10 x 8 to 8 x 6 cm.
I'm so pleased that these side effects are for a good cause.
I should never think I'm doing okay. I've now got a nasty chemo extravisation (think that's what it's called) on my cannula hand. It's apparently where chemo leaks into the tissue during chemo. Looks hideous! So now I'm seeing a plastic surgeon who's monitoring it all.
Has anyone else got numb patches on their body - mine are not all the time (appart from my right foot) but I get these shivery feelings in specific areas.
Thanks for the advice re "moving things along!" Actually I'm alot less sick/nauseous on Tax so I might ask if I can drop the Ondansetron - good tip. I have Emend (really needed it on FEC, but not sure about on Tax), Ondansetron and the "Dom Perignon" - surely don't need all of it. I'll ask about the sachets too. I bought Movicol but that didn't touch it. Just seemed to resolve on day 6).
I hope you're not feeling too rubbish today hun. I couldn't be upright days 2 - 4 of FEC. Really thinking of you.
Hi Debs, Ali and everyone.
Hope everyone is improving from chemo 🙂
I've had a bit of a grim weekend - the most awful constipation which nothing touched. It's as if Tax freezes all the muscles inside. Ends of my fingers and toes are painful again this time too - but still prefer this to FEC. Because of the aches and strains (pun xx) haven't really had any sleep since Thursday night. But feeling better today so looking forward to a better night tonight. Ali I've had leg ache just like a workout too 🙂 I went for a walk this morning and if felt good to stretch my legs, but gosh feeble! But I've found on Tax you can pick up really quickly.
Hi Ali im day 5 of my first tax..so far I like it better than fec.My arms, knees, throat and head ache today but its not bad at all, just feels mild flu like without the snotty nose.Just normal paracetamol makes me feel ok.No other side effect s at the mo and I had heceptin thurs and tax fri.The ache is like ive had a work out, not unbearable.
Good to meet others doing surgery first.
Had chemo 4 yesterday - Tax. Really really tired today but eating okay which is good. I like Tax much more than FEC. I know I'll have pain from tomorrow but prepared. Just had my bone marrow injection.
Good to see you on here Rosie - you can join both threads x
How are you finding it? HOpe all is going well. Have you had chemo 3 yet (I have chemo 4 tomorrow)? It's good to be able to meet others on a similar journey x
I'm impressed you still have hair after 4 rounds of FEC - go girl xx
I find it interesting that three of us on this board having pre-surgery chemo all have no noticable tumour reduction. So it must be something our surgeons do see - rather than a panic situation! I'm having recon in same operation too - provided I don't loose too much weight. On FEC I lost a lot, but on Tax I've put on 1.5 kg!
I lost most of my hair on FEC one and all by FEC two. I'm thinking of getting a henna Tattoo on my head to last me over the summer as although people love my wig I'm not keen. Also I think the wig it to make everyone else feel better - and maybe if we have cancer people should know and be supportive of our look. Unfortunately I'm not young and beautiful but middle aged and ordinary! But I'd like it. I guess I'll not have hair I can show people until Christmas, so a temp tattoo could be fun.
hiya Stelwah - good to meet someone else having chemo first. I find this quite hard to deal with sometimes as people say "oh my friend had bc" but it always turns out they had surgery first. I've just seen my oncologist today and my lump is still the same size - so I'm beginning to panic. I've had two rounds of FEC and one round of Tax. That said my breast, we both agreed, does feel different - more normal and softer. I hope that's a good sign.
Yes - I'm having a mastectomy and reconstruction as soon as I finish chemo. So long as I've clear margins for surgery I guess they can get all the cancer out then. I'll also have lymph nodes removed.
My Tax side effects were not nearly so bad as FEC, but that depends on your perspective. I have a real phobia about vomiting, so the other side effects are okay with me so long as I'm not sick!!! My main Tax side effects have been, like you the most awful constipation for the first few days, gut inflammation from the steroids, awful nail pain/ finger pain too . Cut all my nails off thinking it was the nails but the fingers are still pretty clumsy and sore. And everything tastes mostly of nothing!
We're hoping to get away for a week post chemo too - before surgery. I really need it 🙂
Did you request the ultrasound - I really want one to see what's going on. LM x
Thanks for that. Havent actually tried it yet thank goodness. One of my friends has bowel cancer and she was taking it so I will mention this to her.