04-01-2019 09:28 PM
So far I feel no bad side effects but I am only in day two and last time they kicked in around day four when I ran out of steroids and anti sickness meds. They have given me something stronger and for more days now so hopefully I will be alright. I lost 4 kg since starting the chemo but my appetite is coming back. I drank some alcohol every day between Christmas and New Year, I felt like a toxic vessel anyway. I confessed at the hospital but they told me not to worry about it and that my blood looked fine. I don't know about the cell counts. I feel lucky I have had no nasty infections, or side effects other than my nausea, vomiting and digestive problems. At least they didn't stop me from getting on with the program.
04-01-2019 09:01 PM
Hi Angelblue and everyone
Regarding my neutropenia sepsis, don't want to frighten people but my oral temp(using the thermometer given by chemo unit) only got as high as 37.2 before I went to A&E. My own ear thermometer was 37.9. I rang the chemo unit and they told me to go to A&E. Its confusing because at the pre chemo talk, they say ring if it gets to 37.5. They issue you with an oral one but they use the in ear ones in hospital. To be honest, I just felt a little shivery but I did have other stuff going on. My throat was incredibly sore...had ulcers and oral thrush. I kind of thought this was just a normal side effect and now know to act on these symptoms immediately as the nystatin wasn't cutting it and needed fluconazole in tablet form. I also had the most intense burning feeling in my chest and through to my upper back. I did have digestive issues prior to bc so already take omeprazole twice daily. They said the burning could be acid, mucositis or thrush travelling down my gullet or a combination of all 3. Tbh I still have the burning sensation now and its 23 days since last chemo. They never did manage to get to the bottom of where my infection originated whilst in hospital but I'm pleased I went when I did and got the iv antibiotics before anything developed further.
Like I say, don't want to be all doom & gloom, just think it's best that people ring their 24hr number to inform them of any issues/side effects they're experiencing and not worry about making a pain of yourself. It's best to err on the side of caution xx
04-01-2019 08:39 PM
@pigeon I'm with you: I only gave up the caffeine after the third blood test came back high, and as soon as my liver issues resolved, it was welcomed back. Still, it was super tough. My ALT was higher, at 240 -- and a leap from 60 in my previous cycle (which itself was elevated, but still in the safe zone). They also reduced all of my docetaxel infusions, to about 77% -- but based on my post-chemo MRI, the T was still very effective.
04-01-2019 08:13 PM
Thanks for your kind words. Re the sore throat: I'd definitely ask them about that, too. Just an idea: have you had any problems with indigestion/heartburn/reflux at all? I do (had it long before the BC diagnosis) and chemo has made things worse on that front. I'm taking Omeprazole and have been advised to continue taking it. Also: at least with me, chemo seems to cause all my mucous membranes to get rather dry - my hunch is a sore throat could be related to something similar, too (just an idea).
All the best for your next chemo!
04-01-2019 08:04 PM
@Reddi and Jenni1966 - I’m from the November 2018 thread. I just had round 4 (first of Docetaxel) postponed until next week - apparently the FEC made one of my liver functions gradually creep up to (I think) 177. They can give FEC when you have high liver enzymes, but it’s apparently a problem for the T, so they are postponing treatment and also reducing my dose of Docetaxel.
Ill definitely work on increasing my water, but I’m not sure if I can cut out caffeine 😨 I’d be a walking zombie 😂 I’ll also try to cut down on paracetamol, as I think that can be harsh on the liver.
04-01-2019 07:25 PM
Sorry to hear you've had a bad time. Glad to hear you're feeling better, It seems theres not many of us for whom its been straighforward. Although my second chemo was postponed I'm lucky not to have too serious side effects. Although the bleeding I had and now this sore throat are a pain!
It adds to the stress when you worry about finances too. You shouldn't feel bad that you can't do as much but I know its hard relying on other people to do more. You have to think that you would happily do more for them if the situation were reversed.
Like you I'm waiting for my hair to go. It is a weird thing to have to be doing!! Mine is shedding but not in clumps yet. But I know after chemo on Monday it won't have very long left. I'm planning on shaving it off on Tuesday. Well I say that but I feel sad and scared. I know some of the other December ladies have braved it though!
04-01-2019 07:12 PM
No I don't know what the lowest white blood count they'll accept is. I had tried looking on internet to try and found out but can't find any reference to it. Would be interesting to know though. I know the normal range is 4-11. Mine was 3.2 last week. I'm guessing it's still under 4 now. I'm a bit nervous about going ahead with chemo with it still being low but I have to trust it'll be ok! Can I ask how it was found out you had neutropenia..did you have a high temperature? Hope your liver results are ok. Its so scary all of this!
I've also had a sore throat since last Weds (26th Dec). I told oncologist last Friday and he said it can happen and prescribed a mouthwash ... he didn't even look in my throat!! By New Years Eve it was worse and I ended up at Urgent care Centre and got given anitbiotics as a precaution. Finished antibiotics this morning and throat still feeling sore. Will mention this on Monday if I still have it or call them over weekend if it gets worse. Just a bit worried about having chemo with sore throat and low white blood count!! Roll on Summer when this (well at least the chemo) is all over!!
04-01-2019 07:10 PM
I've been following the thread without posting for a while. I'm sorry to hear some of you had rather serious side effects and/or their next chemo postponed. Glad to hear others are doing better.
After ending up in hospital for the first time right after my first chemo (due to a UTI flaming up again), I was advised by the cancer hotline to go back again a week later because my temperature had spiked and I had an odd cough. After much waiting and too many failed attempts to get a cannula into my arm to administer antibiotics, I was found to be neutropenic but didn't have an infection. Grateful for that.
Went out into town for the first time since my chemo on 21.12. and enjoyed that a lot but got tired in the early afternoon and had to go home and rest. Have been trying to stay active (go out for walks every day, do a bit of gymnastics) and went back on my exercise bike last night plus to a tai chi class this morning. My other half says I may have overdone it a bit - given the 'excitement' of the past two weeks.
I'm finding it difficult to pace myself. Want to use the 'good days' to get some work done (I'm self-employed and my husband is, too, and my illness has caused us a rather big financial hiccup) but find that I get tired rather quickly. I also feel bad/guilty because I can't do as much in the house as I used to and my other half has to do more (and he's been ill with a bad, lingering cold these past 10 days, too).
My hope is that the next cycle will be better. Fingers crossed (for everyone on this forum, too!).
Still waiting for the hair to fall out - sounds odd when I write that. In some ways I want it to be over.
Wishing you all the very best,
04-01-2019 05:46 PM
Wahini....hope you're feeling ok after your chemo. A third of the way there woohoo. Angelblue....good to hear your chemo is going ahead Monday, hopefully your white cell count will come up a bit in the next couple of days. Do you know what is the lowest they will accept for it still to go ahead. I've just looked at my blood report from when I was discharged from hosp after neutropenia sepsis & my white cell count was 4.1 and neutrophils 2.87. Noticed all my liver results were high so will have to ask Onc about this on Monday. Not sure if neutropenia or antibiotics could have caused this and nobody said anything at the time. Best wishes
04-01-2019 05:08 PM
How are you feeling after your chemo yesterday? Hope you're bearing up. Thats such good luck that deciding to apply for life insurance actually prompted you to consider that scar and investigate the hard tissue underneath. In a way its paid up in terms of your health if not financially. I do wonder if unconsciously we sometimes know theres something wrong. In the months before my first routine mammogram I had started looking for permanent work as it was playing on my mind that should I be ill I had nothing to fall back on. I'd also just looked into getting critical illness cover and life insurance. But I'd got myself so bogged down looking at different policies and what they did/didn't cover that in the end I decided to have a break from it and pushed the paperwork to one side...what a mistake!!
It is annoying and unfair to think that if I were renting my house I'd be getting my rent paid but I can't do anything about that. I should have got myself sorted out with permanent work and critical illness cover sooner...its my own fault! I will just about scrape by with a loan and universal credit.
Although my white blood count is still a little low my chemo is going ahead on Monday thankfully. I do agree that psychologically to think of being a third of the way through is a boost. I hope all you other ladies who have been delayed get good news next week.
04-01-2019 04:03 PM - edited 04-01-2019 04:08 PM
Hi Angelblue, I am sorry to hear you have to deal with the financial stress on top of everyting else. If you were feeling fit and healthy it would be easier. For example my friends were AirBnB-ing there house and living in a van and staying with friends while saving money for a move abroad. But that was a lot of hassle and I assume you just want to be in the comfort of your own home. It doesn't seem fair you and others in your position don't get help with your mortgage and are exptected to 'eat up' your own house.
I bought a house last summer, for the first time in my life, and I was quite worried about the financial consequences so I applied and was approved for life insurance and income protection insurance. However, one of the questions was "do you feel any lumps" and I said "no that is all in the past, I got the all clear from the breast centre and was discharged less than a year ago". I had low grade DCIS couple of years ago, which was surgically removed (no chemo or radio) and a year later the follow-up mammogram was clear. Phew, I thought I had come of lightly. I did feel some kind of hard tissue under my scar that was a bit sore a few months later after being discharged. I googled this and found that it is very usual to have lumpy tissue under breast surgery scars so I was reassured a little bit. But with the insurance application I was afraid it would be nill and void if I didn't mention my lump. I was wondering how long I would have to wait for it to be covered by the insurance but then I started getting worried. Wouldn't it be real sad if I would not have it checked until it was too late for financial reasons? I immediately went to GP to get referral to breast centre and it turned out I had grade 3, 27 mm invasive cancer tumor on extensive bed of DCIS and two infected lymph nodes! Had I waited until my next 3-yr routine mammogram my survival rate statistics would probably have been much more scary. Of course I no longer qualified for my insurance but in a way, buying the house may have saved me. Luckely I have been in permanent employment for over five years so I have 6 months of full sick pay and 6 months of half sick pay (calculated over the last four years) so my worries are not immediate.
Hang in there Angelblue, I hope you will have second cycle soon. I had mine yesterday and it feels good to be a third on the way.
04-01-2019 01:48 PM
@Jenni1966 I'm sorry I didn't catch your note a few days asking about liver issues during chemo . I don't think anyone has got back to you, so I thought I'd write.
As I've said elsewhere, I started chemo in June 2018. Between my 3rd and 4th cycles, my blood tests came back with elevated ALT liver enzymes, around 240 (versus normal up to 40), indicating liver dysfunction or damage. I was on FEC for cycles 1-3, switching to docetaxel, Perjeta, and Herceptin for cycle 4, and had my 4th cycle delayed for 2 weeks. In my case, it may have been a combo of the chemo, antibiotics for cellulitis in my cannula arm, and a few cheeky half pints of beer and dehydration during a short August walking holiday. My liver did recover -- it definitely needed time, but I also drank lots of water, cut caffeine (my vice), and, on the suggestion of my breast care nurse, took A Vogel milk thistle drops (putting 20 drops directly on my tongue 2x per day, rather than diluting them in water). I have no idea if the milk thistle drops helped or if it was just the time, water, etc. For later cycles, my liver function was fine -- even despite having to go on antibiotics again at one point.
I hope your liver has healed enough to go forward next week.
03-01-2019 08:36 PM
drummerswidow - its hard when you have the additional financial stress on top of everything else. Its a shame you've had to use your pension. I had just started applying for permanent work when all this happened as it was always in the back of mind ...what I would do if I was ever ill. I should have started applying sooner! xx
kathyx - thanks for that info. I think it works out cheaper if I get a credit card balance transfer loan but I'll look into it more. I hope you're doing ok xx
03-01-2019 07:35 PM
Angelblue - you should be looking at applying for a Support for Mortgage Interest Loan. https://www.turn2us.org.uk/Benefit-guides/Support-for-Mortgage-Interest/What-is-Support-for-Mortgage...
03-01-2019 07:11 PM
03-01-2019 06:56 PM
Dicat - I thought the same about my delay, that I would try to enjoy the time and get myself back to strength. But although I definately feel better than this time last week I haven't felt relaxed at all! I hope you get the go ahead on Monday for Wednesday xx
Jencat - thanks, yes I've been in touch with MacMillan and got a small grant of £185 but theres not much else available out there. I should just about get by with credit card loan and Universal Credit. Plus I've got so much stuff that I've saved with the intention to sell on ebay and never get round to listing it ...so nows a perfect time!! Hope you're doing ok xx
Drummerswidow - just read your message as I'm writing this one! Hope you're doing ok xx
I'm really going to try not to stress about money. I just have to think that although things aren't great at the moment they're far worse for some people. I have good family and friends and there is an end in sight to all this xxx
03-01-2019 06:51 PM
Hi Dikat. Sorry to hear you have been very unwell and hope you’re feeling better now. I was just thinking today that I’m becoming a bit of a recluse! I have found that the G-CSF injections make me feel a bit rough. I have my next chemo on the 14Th January, so I will socialise a bit more over the next week lol. I visit people in their homes for my job so I’m phoning first to make sure they have no bugs.
03-01-2019 05:36 PM
Angelblue, that seems so unfair about not getting help with your mortgage. Just a thought, but it might be worth contacting Macmillan for some advise and help. They have financial advisors and have helped me-they will know about grants that you might be entitled to x