How odd, Milasmummy, my teeth have been sore too! Nobody warned me about that! And yes... I totally relate to 'Nesting mode'..! This week, before chemo starts again, I want to have the house all tidy, cupboards organised etc, haha.
Other than being pretty tired I've been OK though.. I had a lovely mummy-son day yesterday with cinema and dinner. Feeling a bit emotional today, but probably because it's my late sisters birthday who passed away a few years ago aged 33.. 😞
I had right side mastectomy with sentinel lymph node removal, with implant under strattice mesh, before chemo. I realise that's slightly different from what you're expecting.
For me the surgery recovery had several stages, each 2 weeks long. The first 2 weeks (roughly) I still had a drain in, and limited range of arm motion. Then after they removed the drain there were issues with fluid accumulation at the wound site, and not moving too much helped with that. The longer term recovery involved not bearing too much weight with the right arm (less than 2kg, ahem), and that was related to the strattice mesh being well integrated into the body. At each stage, the breast care nurses and especially the lymphoedema specialist physiotherapist were really great in saying what physical activity was beneficial and which was not.
In terms of the outcome, I'm actually quite happy. The scar is HUGE, but has healed nice and smooth. The implant has a nice shape and I can still wear my old clothes. In terms of bras, figleaves has a good selection of non-wireless bras. The "DKNYFusion Custom Fit Wirefree Bra" works for me (not cheap).
Let me know if you have more questions I might be able to answer,
I've been reading through your experiences with first (and for some now 2nd!) Tax with quite a bit of dread. My first chemo was late June, so lots of you are ahead of me in schedule. I think I had a pretty typical or maybe even experience based on what you all have been writing.
My oncologist put me on a decreasing steroid regime: 8 & 8 mg day before chemo, 4 & 4 mg chemo day and 2 mg day after chemo. Apparently this reduces the horrible joint pain, but not all consultants do this. I certainly wouldn't want to try it differently: things were bad enough.
I got oral thrush almost right away, probably from the steroids alone: certainly by day 4 post-chemo it was clear (white tongue, sore throat & ears, pasty taste) and got a prescription from GP - seems to have cleared up by now (day 10).
I had bone pain, first from the filgrastim injections (days 2 & 3, as usual) and then that morphed into taxotere joint pain, mainly in my ankes, and also in my face (eye sockets, jaw, teeth, cheek bones). The pain wasn't terribly severe by itself, but it was very tiring because it kept me from sleeping more than 1-2 hours at a time. Paracetamol & codeine helped a bit, but only took the edge off, never stopped it completely. Also with codeine I have to take LOTS of anti-constipation drugs and be really careful about that, so it's an extra stress.
By day 7 I was quite desperate and decided to take a chance with clarityn, which is something I had read about here probably? I think that helped A LOT in terms really reducing the pain (not removing it) durably. By day 9 the pain had lifted and I am now drug-free.
Lessons for me in terms of preparing for Tax #2:
1. more mouth care (mouthwash) to hopefully prevent oral thrush
2. start taking sleeping pills day before chemo (I had 3 sleep deprived nights from steroids directly followed by sleep deprived nights from Tax pain)
3. start taking clarityn much earlier, probably day 2 after chemo, and see how I get through with that, a few paracetamol and the sleeping pills, and see if I can avoid codeine
4. stock up on books that don't require huge intellectual effort, because no matter I do what I'll be in bed for at least a goddamn week.
I'm sorry for long post, I've been saving up until I was on the other side of this, which I think I am now.
Other source of annoyance? Being only 4/6 through, and having colleagues and friends emailing stuff like "Aren't you cured yet? Can you do X - Y - Z for me?" - actually, no. I'm in bed and my skull & ankles feel like someone is trying to drill into them from different directions - but thanks for asking! Jeez.
Take care all and thanks for your posting, which has been so helpful in navigating my situation and knowing what to expect!
I'm sorry, but there's a Mr Whippy van that occasionally stops right outside our house and no chemo 'foods to avoid' list is going to stop me popping out for a quick 99!!!
Thank you to everyone who have me advice ref surgery and recovery timescales, it's helped me put it into perspective and plan a bit. x
I did not pay much attention to what was in the lozenges! I don't pay attention to the yogurt labels either.
I did a quick Google and some sites say probiotics are OK and others to leave them There are more than 3000 hits on Pubmed if you search "probiotics and chemotherapy".
They said nothing at all about them at my chemo chat.
Probiotics may be good for some, but not so good for others. It is a very individual choice and might depend on other side effects. Generally eating and food guidelines cover all tyes of chemo, whilst different kinds of chemo regimes can have varying effects on each individual, depending on age, underlying health issues, etc.
This is a general guide issued by a Guys and St Thomas -
And here is a scientific paper from 2014 - if you really want to delve deeply into the subject-
By all accounts, although beneficial for some - during chemo - it might be an idea to avoid in the first 10 days, as by then your white blood cell count might have recovered to a degee.
I must admit, I rather err on the side of caution, as chemo throws enough at you and i'd rather not contend with anything else on top of it. And, now where I am just finished (last chemo Sept 2) I am going to be careful for the next 6 months at least. It will take time for the blood counts and our bodies to recover - to be able to deal with all things thrown at it again.
Filtered water - not dangerous......however, a standard filter might not take out specific chemicals unless your can find a solid carbon filter, which filters out impurities, unwanted chemicals, but retains beneficial minerals. A Britta filter, for example is not a solid carbon filter.
I suppose it's a very devided isssue, and all depens where you look. There are articles for and against them. So difficult to know what is the truth!
I feel pretty 'reckless' now compared to you ladies! I am still eating everything I did before, including Yeo natural yoghurt, and I have not avoided any people or places (impossible with little kids). The other day I was in softplay crawling through the aisles and balls....only afterwards did I think how full of germs these places must be...
I also read somewhere that pro-biotics are actually beneficial during chemo, so I have kept taking them. During chemo I understand it is slightly wasted as it's all destroyed anyway (though I've stubbornly kept taking them). Afterwards they're especially important.
Basically I have lived as I normally do, with the extra fruit or veg smoothie sometimes. Generally I have a pretty healthy lifestyle (which makes it even more frustrating I got cancer!). Don't smoke, hardly drink, healthy diet, active... But now I wonder if I should be more careful!!
Has anytone had their 2nd T? Am just realising I've got mine next Friday already.. Grrr... Time has gone too fast... Or perhaps that's a good thing, as the sooner it will all be over...
Ps: I was asked about genetic testing, and I had said I wanted it, but have not heard anything else..
Hi all - I was on the May thread but have to admit I am not a regular poster, more a lurker!! Am on neo-adjuvant chemo and have had 4 FEC and 2 T so far - have 2 more T to go. My first T was helllish - pain in my bones and joints like I have never had before and neuropathy in the soles of my feet and palms.....also bad constipation. My oncologist reduced my dose by 10% as she said I should be having a dose to my weight when i started chemo not my increased weight now. Also gave me oromorph for next session. I was dreading my 2nd T but am now 9 days post and it has been nowhere near as bad 🙂 Still not pleasant but not so bad - phew!!
Anon -regarding genetic testing - I was referred back in May - got a questionaire about my family history and then heard nothing.....I chased them up after prob 8 weeks and then got an initial appt to discuss it all a week later....it seemed they weren't aware that I was neo-adjuvant and my surgery options dependent on results. It can take 8 - 12 weeks to run the test so I get my results on the 23rd Sept and my last chemo is Oct 7th so just in time to start discussing surgery with all information!! So what I am saying is call them and chase if the timing is getting close.......xxx
Someone posted this NHS link on the macmillan forum regarding foods to avoid during chemotherapy.
Hope it works.
Link includes "no probiotics in yoghurt OR supplement form".
I have an appointment with the chemo nurse on Monday so I'll ask about the lozenges - they do look like a good idea, but it's a good point about whether we're allowed to have them.
I think I'll get them anyway to start taking them a couple of weeks after my last dose to see if it brings my sense of taste back quicker - I'm 17 days after my first T dose at the moment and still can't really taste white wine, so I'm willing to try anything to fix that!
as I had a mastectomy with an implant replacement, I cannot be of much help with this. However -
firstly here is a link with more information - you can download the publication as a .pdf to read on your device.
You might also wish to private message Belle, as she did have this type of reconstruction - I am sure she might be able to share her experience with you.
This is a link to Belle's proile page - https://forum.breastcancercare.org.uk/t5/user/viewprofilepage/user-id/106018
Hugs - Sue xx
Thanks for the good tips on here again. I might order those mouth lozenges... I've spent a fortune so far on things that might help me!! They also do a 'Gastro' version for the stomach... Have you heard of that?
As for operation: I would try not to have too high expectations, and then it can only be better!
I can feel your pain with having a 1 yr old. My operation was different (reconstructive mastectomy), and I was not allowed to pick up my 1yr old for 6 weeks! Impossible! Parents in law were around a lot, but there are moments where it's just impossible. You'll find a way around it though...like I did with a silly hip swing and have him on my other (good) side. Not ideal..but better than nothing. As for holiday.. If it's not putting too much strain on you, see how you get on and keep it as something you can look forward to affter this last hurdle. Warn your partner he'll have to do all the lifting, driving and childcare. Haha!
As I'm approaching my penultimate chemo I'm starting to think about my surgery and have an appointment with the surgeon in a couple of weeks.
I'd be really grateful for the views of those of you who have already have the surgery.
I'm probably going to have a mx with diep flap reconstruction (I think that's what it's called, the one where they take the tissue from your stomach) although there's a chance that if the chemo's worked really well I could just have a lumpectomy. I'm also having the 2 sentinel lymph nodes removed.
It would be really good to understand just how debilitating the surgery is (assuming I have the mx) and what the recovery period is like. I have a 1 year old, so it would be good to have my expectations managed about how long it'll be before I can pick him up. I have a (cancellable!) holiday booked which is likely to be 3 weeks after surgery, just a UK one where I won't have to do much, but it would be useful to get your views on whether I'm likely to feel up to going on it or not. Also, I'm hoping that the recovery from surgery will be an easier journey than chemo, so this would be a good chance to give me a reality check if it's as bad as chemo (or worse!).
Any other tips for surgery would also be gratefully received. I know there's a lot of information on the forums, but I try not to delve to deeply into the 'big' chats because there are too many people out there with horror stories that I don't want to know about!
As someone that is having Tax for all 6 cycles I have a couple of suggestions that were given to me. The first thing is that you might want to try the hayfever medicine called claritin. It is routinely given in the USA and nobody seems to know why it works but here is a link if you want to find out more:
because not everyone has the aches they don't routinely given the out on the NHS but they are non prescription and cheap.
The second thing I would mention is a bad mouth. This information came from my sister-in-law she had Non Hodkinson's Lymphoma not breast cancer but her drugs made her mouth dreadful. They gave her these:
I bought some myself from Amazon about £20 for 30 and the plan is to take them for 5 nights after each cycle so the pack should last the 6 rounds. Anyway you take them last thing at night after brushing your teeth using bottled water for rinsing so no chlorine to damage the good bugs. Suck one slowly and run your tongue all over your mouth to try and coat your tongue, gums, roof of the mouth and possibly your throat. Then go to bed and let the good bugs have access for several hours undisturbed by food and drink.
My mouth has been good but I don't know if it would have been fine anyway.
so sorry to hear it will take so long for you to even have your initial visit - and them the wait for the results to come back, too! It is always so stressful to have to wait for such a long time, about something, which may affect others in your family, too.
I wonder whether the current disputes in the NHS may have something to do with it - and they are taking the likely delays/cancelations/backlogs into account?
When I have my appoinment with the radiotherapy consultant I do intent to try and find out, whether this looming situation may have an affect on people like us. I guess the it would not affect those going through active treatment - but hope and pray it will not affect early diagnosis and relevant tests and scans, which will have to be done.
I will update you , once I know a little more next week.
Anon16 - I hope That you may be luckier than Belle, with the timings on your genetic testing.
Hugs to all
I'm glad you've had today off. I know there are financial limitations to amount of time anyone can take off work (ie if it ends up having to be unpaid leave), but it really is so important to look after yourself. This is also in your work's best interest because they want you fit and well and able to work normal hours as soon as possible too!
I don't think I've had any hair re-growth yet, but one of the chemo nurses did say to me that he's seen re-growth during T on patients, so it's not just a rumour, it does happen! We'll just have to keep our fingers crossed.
sent you a PM - hope you get it and you can reply. If it does not work, let me know.
Some have had this problem, but we might get it sorted.
bagpus comments are absolutely right. I have faced very similar problems, too. The stress of wanting to be well may be quite hard for you, as it was for me. Also having to look like a non chemo person in the time I am working - has been stressful.
I have started a thread with some of the basics - re cancer, treatment and work on this thread
and hope you find it of help.
Somehow I managed to work through my treatment to a degree. Cycle 1 - worked from home the first 10 days, then back to normal, cycle 2 - worked from home first 10 days, then back to normal, but cycle 3,4,5 and 6 those 10 days are sick leave. Returning to work post cylce 4 and 5 has been challenging, as chemo brain and cumulative fatigue make it very challenging to work even at 75% capacity. I'll let you know how I get on, just having started my last cycle today.
It also has to be said that full recovery of our immune system may take its time post chemo. On average it can take up to 9 months. Fatigue should start improving, but do not expect too much in the first 4 months post chemo.
Please feel free to pm me, as you did before, when we initially talked about this. You are putting yourself at great risk with a compromised immune system and this risk is increasing the more cycles you have.
You must put your health first!
Sounds like you didn't catch the stomach bug off your kids, phew!
Completely agree about the sleeping pills. Wish I'd used them the first few nights after T rather than holding out until desperate - next time round will def start taking them earlier to get through the hot flushes. There's no shame in any of us doing anything we need to do to get through this awful bit of our lives.
Sorry to hear you've all had a bad time on T(and more FEC).
It does get better, and I can now say I'm finally starting to feel better again. For me the mouth was the worst as well, and that's all healed now. Still dont have much taste though, everything tastes nasty! But at least the pain is gone. The only thing now is occasionally during the day I have periods of bloated/indigestion/nausea feeling, but then it passes again (usually nearer the evening).
So all in all I shouldn't complain.
Btw, I hate to admit this, but the only wat I can get a decent amount if sleep is now with sleeping pills. Both the hospital and the GP totally agree that this is OK for the time being, and have given me two different kinds.
I hate the idea of sleeping pills, and I am very aware of it all, but then I think a good nights sleep is essential at the moment. I'll stop when chemo is finished and we'll deal with it all then..
But just wanted to say to you ladies who are having trouble sleeping, you don't need to suffer: the nurses or gp are quite happy to give you some sleeping pills...
A good nights sleep makes me feel a whole lot better in the morning! 'Sleep is the best medicine'... Isnt it.
Good luck to you all.
I'm so glad you're both home and hope you both continue to improve. xxx
Anon16 - I think you need to put your health first. Overdoing it when you're in such a fragile state isn't going to help anyone. Perhaps your boss hasn't called because they don't want you to think that they're hassling you to come back to work? Either way, remember that cancer is considered a disability in employment law, so you can't be discriminated against. They are obliged to make reasonable adjustments to support you, and allowing additional time off to recover from chemo is (surely?) exactly that sort of adjustment. Perhaps when you're feeling better you could chat to them about time off for the next 2 cycles (assuming that's what you're having) so you can plan in advance for more sick leave to recover as I can't imagine T is going to get any easier for any of us? At least that way your boss knows in advance when you're not going to be at work, plus it takes the pressure off you.
So glad to hear you're home netti37 - this T is certainly brutal. I'm now 6 days post first T, the ache's and tenderness are bearable - keeping on top of it with brufen and co-codamol, but for me the mouth, throat and lip pain have been the worse.
Was given nystatin by GP over phone consutation yesterday, must have taken half a bottle last night, could hardly speak or swallow this morning and back to the Docs i went and he told me off (in a very kindly manner) for not going to out of hours this bank holiday weekend, as back of my tongue and throat were covered in thrush +++++++. Gave me 10 days worth of fluconazole. Feeling slightly better as rinsing regularly with mouthwash and diffulam, but throat still feels like i've swallowed razor blades!
I will be better prepared next time and hopefully they will give me thrush meds in advance. Wasn't aware it could get you this bad - was only warned re aches and joint pains and tingling in fingers and feet.
Hoping all are feeling better this evening