Hi, thanks for replying..
my pre chemo appointment is for next wed....thanks for all the tips....so much to take on board....bricking it xxxx
i have suffered with it each time but I also have naturally low Bp and the Fec seems to lower it further. I wouldn’t worry too much about it because everyone is different and some people suffer very few side effects. It’s good to be prepared for certain things, I would particularly say mouthcare. I got some really good tips from the lifeafterlola blog, think the link is on Feb2019 group. Mai that started the group is the person who wrote the blog. My mouth gets dry so am finding the biotene products useful but if at any time you develop sores or thrush you would need to get straight onto your unit for treatment. I found the difflam mouthwash better than Corsodyl and the gelclair sachets are good. Fingers crossed you won’t suffer. I swapped to a child’s soft tooth brush and made sure I cleaned my teeth 3 times a day and tried to remember to rinse after eating anything. I know it’s easier said than done but try not to worry too much about what might happen, prepare yourself for the things you can and once you start don’t hesitate to contact your unit if you feel something isn’t right. Sorry you might have said previously but have you had your pre-chemo info session and which chemo are you having? X
Hi, your night sounded horrible, is that the first time it happened? I have positional vertigo and can't lay down so sleep sitting up, I hope to god I don't get that little gem of a side effect!
Its rubbish about the immune system being compromised and keeping away from " danger" .......think I will become a recluse....hubby has already banned me from shopping in case I pick up a lergy before chemo....
ps did the spinning stop when you got up? Xxx
3rd cycle of Fec, day 2
Well that was an interesting night. Every time I turned over in bed got that feeling like when you have had way too much too drink and the room is spinning. If only it was due to drink 😂 feel overwhelmingly tired this morning. My eldest daughter and 2 granddaughter’s were in Lanzarote during my good week so was really looking forward to seeing them. Youngest granddaughter, 14 months, has been projectile vomiting for last 2 days so they’re still having to stay away ☹️ Will try and have a sleeping/reading day with some meditation apps thrown in. Don’t know about everyone else but I struggle to concentrate on anything and that’s when I get the doom and gloom thoughts and start to feel down! Hope everyone else is doing ok today x
I’ve got four more after Monday. Changing to Taxol at the end of Feb. New SE to look forward to then! 🙄🙄
I know what you mean! Don’t want to have the chemo but don’t want it delayed either!
if you click on chemotherapy monthly threads then click on Feb2019 chemo starters you will be in the group with people starting at a similar time to you. It is really useful however to drop into the other threads as you can learn a lot from the ones that are ahead and have experiences/tips they can share.
Good luck x
Hello, I see my oncologist next wed to find out when I start......would love to join the thread, I am learning so so much! Xx
Thats my 3rd and final FEC done! I feel totally spaced and headachy again. The nurse checked my obs and bp and heart rate were up for me but nothing alarming. Just got to ride it out. I’m going to try my best to stay calmer this time but not easy!
Jayne1966 sorry you’re feeling rubbish. A lot of us seem to be getting headaches and feeling tired all the time does shorten our fuses. Sending you a big virtual hug 🤗 hope you got to enjoy your curry.
maryKamille thanks for your good wishes. I did feel lousy yesterday and I think I was stressing myself more thinking I might not be able to go ahead with my chemo, then I was stressing myself thinking that maybe I shouldn’t if I’m not well enough! I know the surgery isn’t going to be a walk in the park, but so can’t wait to get this part over with. Love to all x
It sounds a daft thing to say but I wish I was as far down the line as my 4th! We all dread them but we so want to get it all over with. Good luck with your next one.
Sorry, DiKat re my previous post. I did not realise that 'tomorrow' had already come for you. Hope you feel better than you expected. XX
Poor you. No, that's not a good place to start. I have a blinding headache again today, too. That wasn't a problem up until now. Seems that each cycle brings different things. My eyes also feel gritty and uncomfortable in the evenings. Try to have a relaxing day today and take any medication necessary to relieve you. Make yourself as comfortable as poss before tomorrow. XX
Hi MaryKamille. You’re certainly going through it! I’m having fourth EC on Monday if bloods okay. One liver enzyme was raised as was my creatinine last time. Hoping they have come down or they could delay or reduce the dose.
Dreading my 3rd FEC tomorrow as have felt awful all day. Headache, nausea and low back pain on the right. Hope I feel better tomorrow. Not good to be starting on a low point!
All info gratefully received! I take prescribed Vitamin D supplements but that's down to Hepatology as I have early stages cirrhosis. The latter is well under control but then who knows with the BC surgery and all that's followed on from that.
I try to not think about all the negatives but bad days tend to push you that way and I have had a blinding headache since I got up this morning which is still pestering me!
That was encouraging for me. I hope my 3rd Chemo on 7th February does not give me any more problems with teeth/mouth! This 2nd one has given me swollen, red and painful gums at bottom front from day 5 until about 11/12. Pretty OK now. It makes me think I just have a weakness in that area and Chemo will root it out and take advantage!
Many thanks, Reddi. I thought there must be something else behind the need for the hormone treatment. Tablets instead of injections of bisphosphonates which don't affect jaw sounds better, even though other SE issues.
I don't understand ER+? - sorry! I was told I did not have the agressive form (HER or something?) and that I would benefit from hormonetherapy as I had shown positive for that. Oncologist has mentioned calcium and I think he meant leaching from bones. However, I tend not to listen too much as I only want good news! At least my last scan - an angioplasty one - was good and he was pleased with it.
He did speak to the dentist the day before I had my tooth extracted to give permission for it. Dental practice had phoned me the day before the appointment and said they needed written authority from him. What else they discussed I have no idea!
Anyway, I am not going to just comply on this one as we tend to do all the time because we really feel we have no choice in the face of the disease and their 'expertise'. But my dentist is a professional, too, and she certainly knew about zolderonic acid!
I am in the middle of 2nd chemo course and again had mouth problems with gums bottom front swollen, red and sore, from day 5 - almost cleared now - by day 11/12. I have seen horrific pictures of oral mucositis on a website and am nothing like that - BUT, should I add .... yet? I've got 4 more Chemos to go and after that Radiotherapy which apparently can cause the same problem.
Hi all - reading through everyones posts it shows how many different forms and stages of breast cancer there are...we're all becoming medical experts!! I'm tired again...Made several calls to hospital yesterday and today to try to get to more information re still having low neutrophils even with the daily injections (I found out that theres been no plan to increase injections after chemo 3 ...the chemo nurse I spoke to just said I may have every chemo delayed..lovely). Finally got an appointment with oncologist for Friday...but why does everything have to be a battle!!
Hi Agate - I'm sorry to hear about your brother-in-law and that he now has CIPD. The pain from these conditions is indescribable when its at its worst. I hope his pain improves. But it can be a very long process. I had GBS 14 years ago and have been left with peripheral neuropathy in both legs, tinnitus and fatigue. I agree that it is really difficult when you have a rare illness that even most medical professionals haven't heard of. I had a terrible experience - from GP's to the hospital I eventually went to. I was left in a bed for over a week and was getting weaker each day ( I looked like I'd had a really bad stroke). By this stage I could feel my body shutting down and decided that if I made it through the night I was going to discharge myself. As no one was helping me I felt that the only decision I had left that I could take control over was where I would die ...and it wasn't going to be in that horrible ward. The next morning I told the senior nurse I was leaving (quite difficult as I could barely speak with paralysed face!!) and she got in touch with the senior neurologist at the sister hospital who came to see me the same day and took me back with him and I was finally treated. After all of that though I was lucky in that I wasn't ventilated and have made a very good recovery and although the neuropathy can be uncomfortable I'm not in pain.
But its sods law that all these years later GBS has influenced the treatment I can have for breast cancer! Re oncologists - I'm changing to a different one after my chemo 3 next week. Although the whole experience of GBS and the treatment I received left me with a lot of anxieties, it also taught me to fight to get the best...which is why I'm changing oncologists and why I fought for the Oncotype DX test. Without that I would never have known I needed chemo. So maybe the experience I went through does have a plus point too! I hope you are doing ok in your journey? xx
You clearly had a lot of decisions to make with having the different types of cancer in both breasts. I really appreciate the info you have given and know I need to start researching as I have to make the right decision for me. I'm not sure if I can cope with the anxiety of future mammograms etc. And that's why I'm learning toward MX. I need to go through it all again with the breast consultant but due to having chemo first and being passed over to oncology don't really have any understanding at present. My hubby says I should trust the experts. I wish I could be more like that but I like to know what's going on myself, even though it usually ends up causing more anxiety.
Thanks again xx
I am also bilateral, one lobular, one invasive ductal. Both ER+, PR+. Her2-
have had bilateral mastectomy, one ANC, now on FEC-T and will get radio after.
@Jayne1966 I think the leaflet you have may be slightly outdated? In November 2016, NICE approved prescription of Perjeta for people with primary/local breast cancer -- in just the breast or the breast and lymph nodes in the armpit -- before surgery, because there is strong evidence that adding it to Herceptin alongside chemo (docetaxel or paclitaxel), reduces the size of HER2+ tumors, and thus improves the surgery options available. Breast Cancer Care has a really good primer, if you haven't seen it.
@DiKat - The decision between WLE (lumpectomy) versus mastectomy wasn't set from the start for me. I expected a Mx of my right breast because I had extensive DCIS. However, my first surgeon suggested I could have a WLE, and if I didn't get clear margins, I would then have a Mx (no re-excision to shave the margins). I was quite concerned about appearance, post-lumpectomy, because so much tissue -- at least a third of my smallish (36B) right breast -- was going to be removed. When I spoke to another surgeon at my hospital who does reconstruction herself (and thus could talk about immediate reconstruction as an option), she felt far too much tissue needed to be removed to make WLE a viable option, cosmetically. She also felt that because I am a lifelong non-smoker and had no lymph node involvement (and so probably wouldn't need radiotherapy on that side), I was a very good candidate for skin-sparing and nipple-sparing Mx with immediate reconstruction using a prepectoral implant, which is what I ended up getting. Thankfully, the nipple sample she took was cancer-free, so my nipple didn't need to be removed in a subsequent surgery. I am over the moon that this worked out, as I knew from the moment of diagnosis that I wanted reconstruction if I had a Mx, but the idea of having 2 major surgeries more than a year apart was overwhelming to me. There's always a chance that the reconstruction fails, or for some other reason I either have to go flat or have another reconstruction, of course, but at least we've tried this first. That helped reduce my anxiety.
I have (had?) bilateral cancer, and the tumor in my left breast was removed via WLE / lumpectomy, since the IDC wasn't accompanied by extensive DCIS. (The IDC in the left breast was actually bigger than in the right breast, go figure.) There was some question about proximity to the nipple on the left, and whether I'd need to have a WLE that removed the nipple, too, in which case I wondered if having a Mx was the better option. Plus, having synchronous bilateral breast cancer puts you at higher risk of recurrence, so we did talk about bilateral Mx. But I knew I'd get radiotherapy on this side, and WLE + radiotherapy is just as effective as Mx.
In the end, I opted for WLE on the left because I wanted to try to preserve nerve sensation in one breast, if at all possible. (With WLE near the nipple, there is a chance of losing nerve sensation altogether, so this was a gamble.) I also trusted that they were going to stop every bit of estrogen production in my body -- I'm getting Zoladex to turn off my ovaries and an aromatase inhibitor -- which, fingers crossed, will help keep the ER+/HER2-neg cancer on this side from coming back. And I'm getting bisphosphonates, too.
My Mx-recon side looks so good that I joke with my team that it puts my WLE side to shame and I ought to have gone for a bilateral Mx. If appearance was my main consideration, that would be true -- but I did retain nerve sensation in my left breast, and some in my left nipple, even, and that was a big part of my decision. We'll see how the tissue holds up after 20 sessions of radiotherapy...
In the end, it's all about the medical decision that makes *you* most comfortable and confident, that gives you the most reassurance. My thought process, and the things I took into consideration, may be completely different to your own. My surgery thread had at least one woman struggling between WLE and Mx, and she finally decided on Mx -- and though it wasn't medically necessary, her surgeon completely supported her in her choice. I'm sure the same is true when it comes to bilateral Mx. Alas, there's no perfect choice, not yet, anyway -- and oh, how I wish cancer treatment was evolved to allow you to just turn off the cancer cells and keep the breast as-is!
Edited to Add: If you are interested in research on effectiveness of WLE + radiotherapy versus Mx, let me know. I did a bunch of reading on this, and I recall there are lots of resources on it (I looked at UK sites, like Breast Cancer Now and Cancer Research UK, as well as US sites, like the Mayo Clinic), but I didn't bookmark stuff. I also read Kristi Funk's book, Breasts: An Owner's Manual, and some of the journal articles referenced in it.
Hi Reddi, MaryKamille, KitKat and others, sorry difficult to follow/reply to threads!
i am having Zolendronic acid infusions. 1 every six weeks and then 1 every 6 months for three years. I am post menopausal had hysterectomy and ovaraies removed in 2005. My tumour was oestrogen and progesterone positive, I’m also overweight! I was told the risk of osteoporosis is high hence the Zolendronic acid but also research has shown that it helps prevent bone metastetes. I also take Vitamin D supplements. My dentist and hygienist are seeing me a bit more regularly to check my teeth as well.
@KitKat18 - I think I was down for a mid-chemo scan for two reasons. First, the tumor in my right breast was not palpable. It also couldn't be seen on ultrasound, and was only detected on mammogram because they saw suspicious microcalcification clusters, which is why I got MRIs. Second, I think they are quite keen to have data on the effects of HER2 antibodies on HER2+ tumors, and so they needed a scan between the two groups of chemo cocktails to know how big the tumor was after FEC but before Herceptin and Perjeta.
I recall that one of my fellow June 2018 starters had blood sugar issues, but I've been having trouble finding her posts about it. If I find her, I'll try to connect you. And definitely raise it with your team!
P.S. From what I've read, jawbone necrosis from zoledronic acid is quite rare; something like 1% suffers this side effect. If I had any dental problems, I would be worried about it, nevertheless.
Hi Dikat, my sugars seem to be going the other way, this cycle day 4-10 I got really weak and wobbly if I hadn’t eaten in a couple of hours but it stopped after my 7 jabs finished. It may just be a coincidence and another se to report. I also keep my head covered unless I am alone, usually with a cap at home but keep my wig close by in case I get an unexpected knock at the door. Trouble is I have had so many compliments from people who don’t know my status re the new “do” that I probably shouldn’t go back to my old style 😂 (loved your photos btw)
Reddi, thank you for the info re zoledronic acid, I am also down to have that, but had been wondering about it’s value but my onc says it reduces recurrence.
Is everyone having a mid chemo scan? I don’t think I get one til chemo finishes, something else to ask about on Wednesday!
@maryKamille I've been thinking about your concerns about zoledronic acid all day. I know you've had such trouble with your teeth during chemo, so it sounds like a bad idea. But is your tumor ER+? I'm assuming so. If you are post-menopause, I imagine your oncologist will be pushing hard for you to take an aromatase inhibitor, which stops your fat tissue from making estrogen after your ovaries shut down.
Being in menopause (whether naturally or chemically-induced as treatment for cancer, like I am), plus taking an AI, puts you at high risk for osteoporosis. And zoledronic acid and other bisphosphonates delivered as an infusion are very effective in preventing the calcium from leaching from your bones -- it's not an endocrine therapy per se, but an adjunct, something to help ward off the most treacherous side effect of endocrine therapy. But there are other options, including bisphosphonates taken orally, as tablets. I believe these are not associated with jaw necrosis, though they have other side effects (inflammation of the stomach and the esophagus), which might make them problematic during or shortly after chemotherapy if you're having problems with mucositis. Perhaps your doctor would be willing to have you start them later?
@JenCat mentioned the recent studies showing that zoledronic acid may reduce recurrence, but it also appears to prevent metastases to the bone. That might be why, in addition to reducing the risk of osteoporosis, your oncologist has suggested it for you.
A lot to think about, I know. It would be great if your dentist and oncologist could speak to each other directly, and even better with you there!
Yes, maybe that's the case. Will ask at next appointment. Have sent you a message. Also, hope you don't mind me asking but did you know you were having an MX from the off. My breast consultant said about having a lumpectomy but the way I'm feeling right now, would like a double MX even though right breast isn't affected. Would you be able to point me in the right direction for researching lumpectomy vs mastectomy. I had kind of put it to back of my mind as just wanted to get chemo out of the way but know I need to face it and start getting my facts and thoughts together x
@DiKat Rereading your post, I'm wondering if your team has chosen 3xTPH for you because there was some cancer in your lymph nodes, and they're thinking about getting you to surgery a bit sooner. But I still think it's worth asking for a 4th cycle, and seeing if they can just ensure you have an early-ish surgery date after you've recovered from chemo.
@angelblue I remembered your GBS because for close to 2 decades my mother was thought to have had it. It turned out she has Pompe disease, a muscular dystrophy, but I learned a lot about GBS over those years.
Think I must be getting used to it angelblue. At first I used to almost be pulling it off as I walked through the door. Tend to forget now and leave it on for a while although it does make me hot. It's much better now it's flattened too. Felt too thick before. My natural hair was finer and although I always longed to have thicker hair, it didn't feel right. I've watched YouTube videos and tried scarves in different styles but don't feel comfortable in them. Wish I could go out with my bald head but not brave enough yet! Posting my pics on here was quite liberating but obviously in good company and feel safe with you guys. I was hovering in the background without my wig when my hubby answered the door to the parcel lady the other day, so that's a start. I keep telling myself it's just hair xx
Hi @DiKat Yes! Ask them if you can get a 4th cycle in -- that you have heard other trusts are doing this, because of the great outcomes from neoadjuvant Perjeta. Be sure to involve your breast cancer nurse / key worker, since she is supposed to be your advocate. (Mine got me switched from a surgeon who did no reconstruction to one who did so that I could pursue my questions about mastectomy + immediate reconstruction -- which I ended up getting.) And if your team are reluctant for some reason, I'd suggest getting your hospital's patient advise and liaison service involved, too.
One thing to keep in mind: you have to get docetaxel or paclitaxel with the Herceptin/Perjeta. For medical reasons (FEC got me neutropenic and hit my liver), they decreased my first T to about 77%, and all of my subsequent Ts were at that level, so my 4xT added up to about 3xT at 100%. If they are worried about T effects, lowering T per infusion might be an option. (They also might be resistant because they want you to receive 100% T, but I think the evidence for the HER2 antibodies is very strong.)
hi reddi - thank you xx yes thats right about GBS and the neuropathy- you have a good memory! I know that ultimately they are trying to keep me safe by delaying. Its just getting your head around that when you have the chemo date on your calender and get yourself prepared. I think we're all having ups and downs but I know this will be over soon. I hope you're ok xx
@angelblue What a frustrating thing to hear, that your chemo cycles might all stretch out to 4 weeks. I'm hoping that your nurse just wasn't very clear, but if I recall correctly, you've previously been diagnosed with Guillam-Barre, right? And that as a result, you're getting FEC only -- no T, because of the risk of peripheral neuropathy? If I've got that right, I suspect they might be planning to extend a week, rather than doing bloodwork a bit sooner, to accommodate that and ensure you're as safe as can be while getting the most benefit from chemo. We'll be here for you! 💖
I am her2+, just about to have my 3rd and final FEC before I move onto THP. I have been scheduled for 3 cycles of this then surgery then radiotherapy. It has spread to my lymph. Based on what you're saying, should I be pushing for 4 cycles of THP?
Any advice would be appreciated x
Hi dikat - yes I keep getting told palpitations down to stress...it made me more stressed I'm definately changing oncologists after FEC 3 next week. As my current oncologists day on the chemo suite is Monday I have to have bloodtests on the previous thursday. But if I swapped to an oncologist who's day was wednesday I would have blood tests on Monday like you. Thats an extra 48 hours for blood levels to recover. I'll do anything to try and stop it being delayed!! Are you getting used to your wig now? It looks great by the way, very natural. I had mine trimmed but think it needs a bit more off...although maybe I need to wear it for a while to get used to it xx