Starting Chemo in December 2016
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Good morning! I am new to this group, but started my weekly Taxol/Herceptin on 12/2/16. Is everyone here on a 3-week schedule or is anyone on a weekly schedule like me?
All going well (aside from all the usual side effects) - but I have a question about hair loss. It seems with weekly doses, the hair loss is delayed a bit. I get my 6th treatment today and it is just now starting to shed. Can anyone tell me what their experience is with this? How fast does it go from shedding to needing to shave and jump to the wig? I have a wig at the ready, but it would be helpful for some sense of when I might need to head to the hairdresser. For now my hair still looks normal.
Thanks in advance - any info appreciated!
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Hi Lisa428! Welcome to our group! I am finishing dense dose A/C but will start weekly Taxol in a couple of weeks. I've heard that hair loss is less dramatic on taxol than other treatments. I've even read that some people start growing a little peach fuzz back while on Taxol!! There is a weekly Taxol group here on the website that could probably answer many of your questions.
https://community.breastcancer.org/forum/69/topics/788735?page=231#idx_6913
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@ chickensandgoats - Thank you so much! I will check out that taxol link. I had read that it's "100% loss" with Taxol, but I'll check out this link and see what I can learn. Thank you!!
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I've also heard and have a friend and a nurse who said hair growth started back during taxol. In my case it will be last 4 treatments
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Irishmom3 I also had my 3rd AC on the 4th. A few days before my eyes and nose started up. It is annoying but I am hoping this is going to be the worst of things. Besides feeling really tired on days 3-5 I have no other SE's that are complaint worthy. I am gaining some of my weight back so I feel stronger. I even went for a jog on the 3rd. Are you doing weekly or biweekly Taxol?
I hope everyone can continue to stay strong as we go through these treatments!
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Gingkoleaf12-----YES! Beyond bloated and a balloon belly too!! I actually have to place a pillow under my stomach at night when I lie on my side. And due to my burning inflamed fingertips my oncologist had to place me on more steroids which equals more water retention....ughhh.
I started taking Align and eating a yogurt each day maybe this will help with the stomach bloat as I believe all good bacteria is gone from my GI track.~~ hopefully it will all calm down for us
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Ginkoleaf12, yes to the belly bloat! I hate to catch sight of myself sideways in the mirror. And I'm on steroids to combat ITP, caused by the first chemo I had. Makes it worse. Dandelion tea helps. And probiotic foods probably help, too. Yogurt, kefir, sauerkraut, miso, to name a few.
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Ginko--could be the steroids. I know the first 5-7 days I have that too but it goes away. Until the indigestion turns up a couple days later!! Good times...
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Hi ladies, a happy New Year to you all. I know it will be a tough year for many of us, myself included! I haven't written for a while. Asked my husband to shave off my hair on Boxing Day as I was experiencing such bad scalp pain after losing half of it already. Felt so comfortable within an hour of the shave. Was finally able to sleep comfortably too. Had my second Chemo & Herceptin round a few days after Christmas. Had a lovely nurse this time yay. I was better prepared this time so have so far prevented diarrhoea. I once again suffer from one runny nostril, dry mouth and sore feet. What is new this time is for the past 6 days I've had constant pain in my jaw and ears. I had my ears checked at the doctor and I don't have a temperature so I'm now wondering if it's my glands that are sore or a jaw issue. Does anyone else suffer this? Having blood count done in 2 days then seeing oncologist so hopefully solving this soon.
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Gingkoleaf12 - I stay really bloated especially when I'm on the steroids and for about a week after an infusion. I just had my second round of Taxotere and Cytoxin on Thursday. I couldn't sleep that night so felt pretty out of it (dizzy, tired,etc.) yesterday. Anyway, I did manage to drag myself to the gym and walk the track for 30 minutes. I think the walking really helps aid the digestion and get the drugs moving through your system better. I have to say it's a bummer about your taste buds and the fact that chocolate no longer tastes right.
On my first round of chemo I didn't have a Nuelasta shot but have to start getting them now since my WBC got so low the first time. So, I'm kind of anxious to see if I get any side effects that people talk about (bad bone pain). What has been everyone's experience of SE's with Nuelasta?
I feel much better this morning since I was finally able to sleep last night. Unfortunately I think my allergic reaction to the Taxotere is already starting up again so will probably have to start taking a 6 day dose pack of Methlypredinisolne (steroids). The good news is at least I have the RX in advance this time so maybe the horrible rash won't get as bad as before.
I still have some hair left but not much. I had my husband cut all but an inch of two off all around on 1/2/17. I'm still amazed every time I comb it how much hair comes out when it doesn't seem like there is much there. I've been lucky that my scalp hasn't had too much discomfort, but my hair was already fine and not that thick. I wore my wig to work and out and about town after the new year and got a few compliments from people I didn't know too well. So, when they asked if I had a new hair style I just said yes.
Hang in there ladies, we just keep marcher closer to our end game.
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Summer--how is your pain doing? I''ve had that same type of pain in some of my toes the past couple days and now in my heels. Hoping to just do some Tylenol. How long has yours lasted? I'm hoping not to do steroids. So tired of a new pain everyday!
Shell--what do you do for your sore feet?
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Pamela23 - I'm not in any real pain yet from the Neulasta shot. I am taking Claritin as a precaution. I have allergies anyway, so normally take some kind of allergy medicine. The steroids I'm taking are not for pain. I get allergic reactions to Taxotere and get a horrible rash on my body almost everywhere (thighs, chest, back, arms, thighs, butt). It is really itchy and super uncomfortable. I also have a steroid cream to use. So, it looks like this SE is not going to change for me and I can expect it with every infusion. Is your pain in you heels and toes from the Nuelasta or the chemo drugs?
The other SE I get from the Taxotere infusion is shortness of breath when they start administering the drug (within 5 to 10 minutes). This of course is scary. So, then the nurses have to stop the IV drip and give me some saline and wait a few minutes before they start the IV back up. I also have to use a really slow drip rate. During my first infusion the shortness of breath was a lot worse than the last time. Since I was expecting it, I didn't get near as anxious and the nurse showed up quicker. So, I didn't have to be put on oxygen...they just took my BP and pulse.
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Hi Pamela23---My fingers aren't on fire as much but the pain persists and they are very warm to touch and red. They feel like over ripe grape tomatoes about to burst when I touch anything. I don't believe the 6 day dose pack of Methlypredinisolne (steroids) are helping do much but add more water weight. Extra Strength Tylenol did nothing for me. Nurse told me to take Motrin for inflammation with steroids. I decided it wasn't worth telling her how my stomach could not take Motrin now.......thought they would have a clue with all the GI issues!
I have used ice packs off and on. I'm sorry you are having foot pain (toes and heels). I hope all this goes away for all of us after treatment!
ILSunrise---for me, Neulasta makes me feel like I have a horrible case of the flu......bad bone pain in hips, knees, sternum and not sure if chemo or Neulasta caused swelling in my neck this treatment which was treatment number 2. All I know is I was miserable and it lasted an entire week!
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I find a cool foot bath with arnica added helps. I soak for about 20 min then keep my feet up. They are always worse after being on my feet at work all day. I feel like I want to rub them and warm them up but I know that's the last thing we are allowed to do. Plus I take paracetamol and codeine 30mg regularly (stops my overactive bowels at the same time).
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Has anyone else suffered this awful constant ache in their jaw area? It is tender to touch around my ears, under my jawbone and in the front above my chin. Also the slightest draft from a heater or window open will stir up the pain if my ears aren't covered. I'm living on pain killers and sleeping pills and even having to take Oxycodone at night or the pain wakes me. I go to sleep with a hot wheat pack stuffed in each side of my neck and shoulder, them in the morning wake with it all over again. I have only had this since my second round
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Bloated is an understatement. It feels like there is a balloon in my stomach and that it keeps trying to expand even though there's no room left to do so. It is very uncomfortable. My poor belly is hard and filled with air. I just got some gas ex (already tried many other things), but it doesn't seem to be doing anything.
Dee
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@SCGirl50, I'm scheduled to start biweekly Taxol after the AC. I'm hoping this fatigue will get better , my fatigue is worse on days 3-4. I wish we all could have a fast lane to get through this faster and get onto a healthy and happy journey. I have t remind myself to have patience and healthy days are ah
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Irishmom3 I hear you about day 3 and 4. I work on day 1 and 2 then sleep for 2 or 3 days. The worst is almost over this round. My last AC is the 18th then biweekly Taxol. I am really worried about neuropathy with Taxol. Some people also have bad reactions to it.
I hope I can remember what feeling healthy feels like again. The last real memory is when I walked into my dr. office for a bilateral biopsy and was confident it was nothing to worry about.
Keep on pushing ladies. Every day is a day closer to the end of this hell we must go through.
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shell72 I have had issues wit my moth and jaw. Tightening and clenching. TMJ like symptoms and a constant feeling of tension in my head and neck and mouth. Going to discuss with doc this Friday
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Good afternoon! I had my second treatment on Wed and have noticed that I have been much more tired this round. I feel very doped up and foggy. I would normally drink coffee but it does not taste good anymore. Other than that I am feeling ok. My appetite has returned and I'm back to craving carbs and more carbs!
SCGirl50 I feel like I don't remember what normal healthy is either. I can't tell if I'm tired because it's winter and I'm older or if it's chemo or what. Just wishing the days away to get back to some normal!
Wishing everyone good luck on treatments for this coming week!
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Scaredashel - my lips tingle and it feels weird. Almost like a cold sore is coming.
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StayMom- I had more fatigue after the second chemo also. I also think it took me longer to come out of that feeling.
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thanks scaredashel -So pleased someone else has experienced this. Yes I feel like I'm consciously trying to relax my jaw and facial muscles, almost like I've been smiling too much! Yes my neck feels tense too and I'm really headachey.
I also seem to be developing little pressure sores on my ears from wearing head wraps all day at work. With my jaw and ear pain I can't stand the slightest bit of cold air or draught in them so have no choice but to wear my headwraps/scarves over my ears especially when the cold air conditioning is going.
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Ladies..
Right now Im so nervious, I have my first visit with my oncologist. We will see what my treatment plan is going to be and Im totally beside myself with nerves. Im so scared of Chemo, and I know not everyone has the same side effect, I guess its all the unknown that has got me scared, . Hubby somehow has this idea that since I had the surgery that its all over with and no chemo will be needed and that Im cured, I have tried to explain to him that because of the size of the mass I will still need chemo because cells could have gotten lost and be elece where in my body. He thinks the MX took care of all and since it was not in my nodes its all over with . I don't have the heart to keep correcting him . Family is use to me being the strong one and taking care of everything and fix this ,
Please any advise would be wonderfull
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honey beaw - how do you know you'll need chemo? I always wondered why patients without a positive node would get chemo. I also understand certain types are aggressive so that's another reason.
Whatever the outcome, you will get through the treatments. Asks your husband to come with you to doc so he can hear the reasons for chemo
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Honeybeaw, welcome to the group! I hope you get good news at the oncologist. If you have to do chemo, we will be here to support you.I have had three rounds out of 16 and the fear of the unknown was the worst for me.I have found that once I got started I have been able to keep up with most of my duties at home and work. Most of my side effects have been mild and I hope you have a similar response. I understand how it is to be the person who keeps everything together at home! You can do this!
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HoneyBeaw - so sorry you are having to deal with this stuff. It is really hard. It makes it tougher when the family is not in tuned with what the future treatment options might hold (or cannot accept them). Take a deep breath and try to have your list of questions ready for the MO. I see from your signature, that you have IDC so your cancer is invasive. Do you know the % of your tumor receptors ER/PR +? The closer they are to 100%, the easier it is to pinpoint your treatment. So, if your hormone receptors are say 50%, then something other than hormones also feed the cancer. Ask your MO if they did an Onco-type DX test on your tumor. It helps tell if chemo will decrease your chance of cancer recurrence over a 10 year period. Good news that there was no cancer in your lymph nodes. Did you have any lymphovascular invasion (channels to the lymph nodes) in your breast tissue. These items can impact the need for chemo.
scaredashell07 - I have IDC like you with no lymph nodes positive. Even though my tumor size was small, there were other factors that made chemo potentially helpful for me. For example, not everyone's tumor hormone receptors are really high - close to 100%. So, that can be a reason chemo might be a good idea. In my case, mine were 49% and 44% (ER/PR). Also, I had lymphovascular invasion (microscopic cancer cells in the channels to the lymph nodes). So, with that even with rads (required since I chose a LX), can I really be sure all the microscopic cancer cells will be killed. I also had the Onco-type DX test done. Once again, I was kind of in a gray or middle area as far as whether to have chemo or not. So, I had to make a decision what to do. It was really tough, but in the end, I just couldn't ignore the potential benefit of having chemo if it helped reduce my chance or recurrence.
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Summer2016 - so far I've not had pain from the Nuelasta shot. How long after the shot, did your pain start? I got the shot last Thursday, so it's only been 4 days. I am taking Claritin to hopefully offset some of the bone pain I may get from the shot.
dcdrogers - I have the same bloated gut issues going on.
I have not been able to get the whole digestion regulated as well as during my first round of chemo. Even though I've been drinking prune juice, eating prunes, walking, I already had to resort to taking a laxative. I really hate that.....last time I only had to take them once and it wasn't until about 10 days after the infusion. Oh well, once again C'est la vie.
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IL Sunrise------My pain from Neulasta started the next day and lasted this time for 5 days. As I read more responses on this discussion board, I see how much our side effects are varied by individual! Maybe Claritan will work for you and keep you pain free.....I do hope so!
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HoneyBeaw- I see that your staging is listed at IIA - I also had a 2cm tumor without lymph-node involvement and my staging is considered 1A. Anyway, my ER/PR numbers were very high - 95/60 for one tumor and 99/70 for the other. I had an Oncotype DX score of 20 (low end of intermediate gray area) and my MO didn't recommend chemo for me because it was only a couple percentage points improvement for reoccurrence statistics. The hormone suppressants would do the majority of the "heavy lifting". The way he put it was if I do no further treatment, my chance for 10yr re-occurrence elsewhere was about 20-25%. Taking Tamoxifen cut that rate down to 8% and Tamoxifen plus chemo would cut it down to 6%. So was it really worth it to go through all that for only a 2% better chance?
He was honestly against it and advised that I don't do chemo because he didn't think the side effects were worth it - although he still left it up to me ultimately.
Also not sure your age, but if you're post-menopausal, there are even more effective drugs than Tamoxifen for hormone-receptive drugs and there are also options to suppress your ovaries and take those drugs when pre or peri-menopausal.
Of course, this was all before we discovered that the second tumor was a different cancer and was HER2+, and then he definitely recommended that I undergo chemo along with Herceptin.
Anyway, I went into my first meeting with my MO after surgery thinking I wouldn't be doing chemo because I had the double mastectomy and I knew that I would be taking Tamoxifen for 10 yrs given my high hormone numbers.
But best of luck to you! (and definitely make sure your Dr gets an Oncotype DX test done on your tumor - they give you charts that show your recurrence chances with just hormone suppressant drugs or drugs plus chemo to see if it's really worth it).
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