Taxotere, Carboplatin and Herceptin
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TwinMom77, I had a lot of swelling toward the end of chemo. I called myself a human tick. I gained nearly 10 pounds--all water weight. The oncologist acted like it was business as usual, but the nurse practitioner understood and gave me a duiretic. I didn't take them very long--probably less than three weeks. I am not sure why the bloating/swelling happened but I was flat-out miserable.
Deedee, unless there is something else going on beyond "becareful you might get hurt", I would urge you to listen to Lisa and Cowgirl and continue to ride as often as you can. Weather and fatigue may be factor soon enough, so get out there and let your horse help you through your healing.
I am happy to report that my new insurance has authorized my Herceptin through the end of March. No official reports on my echocardiogram or annual mammogram, but all indications are positive. I am scheduled for Herceptin on Tuesday.
Hair question: My hair is finally growing, but it seems rather fine in texture and thin in volume. Has anyone else noticed this with their hair growth?
Here's wishing us all a fantastic week of blessings and joy.
Cheers!
Cloud
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Cloud - The fresh new hair is a bit on the fine side, but that improves over time. Same thing with the thickness. In my case, all of the follicles did not start growing at once. My over-all hair is 2 inches long, but a new layer has start growing underneath so the old thickness I had is coming back now. And remember, herceptin will slow the hair growth. I had my last TCH Feb 9th and my last Herceptin only 4 weeks ago.
Cowgirl - I cannot imagine going thru TCH without my horse(s). They are the best therapy in the world. However, I am sure my boy would appreciate it if I would get rid of the 20 pounds I have packed on in the last year!
Today I meet with the nurse to start my bloodwork and testing for the drug study. If I learn anything new, I will be sure to report back.
Have a great day everyone. Lisa
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I had no idea that hair growth would be affected by herceptain my hair is very thin a year after chemo but for some reason the last week or so it has started to thicken up I was done April 09 with the herceptain so maybe there is hope. I know one thing that has helped ladies is getting it trimmed every 4 weeks or so it seems like it makes it thicker if that makes sense I still have a big hill to climb on that one I just pray we can all get back to us...
Maura
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Hey lisa my sistah! You are in new territory now. One week with out any hard core drugs. Do you feel the diff?
Hope for all a great week. UGGG and Yippie the holidays are approaching!!!!
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It is good to hear all those recovering from chemo. I feel fine but my blood is still working its way back to normal - my creatinine is still elevated and I'm a little anemic even though I don't feel it. My RBC and hemoglobin has been going up a little each time so it is getting back to normal. My creatinine levels are more due to the Clodronate I was taking but now that I've gotten off the trial they have been dropping and I think the next test they may be normal. My nephrologist did some additional tests and it looks like there will be no long term damage.
Lisa, good luck on the trial. It sounds like most get diarrhea on Neratinib so keep on top of that if it happens. I had that all the time on Clodronate and I'm still having a little trouble with it.
Lymphadema?, I was on a vacation for 4 days at a location over 7000 feet above sea level (about the same pressure as on a plane flight) and after it noticed a tiny bit of swelling. I hadn't had any up until then. The physical therapist measured it and it was barely measureable but I could tell because the spots where I can normally see muscle definition like the inside of my forearm were flatter. Doing the exercises she gave me cleared it up in a few days but she said I should wear a sleeve and guantlet on future flights as a precaution and one was ordered.
Yesterday, I wore the sleeve and gauntlet for the first time other than the fittings. I had a cross country flight. I hate it! It makes it hard to use my laptop because my fingers don't bend as easily. It makes my elbow pretty stiff too. There is a spot where it rubbed my forefinger that is still tender even though there didn't seem to be any bump on the gauntlet that was causing the irritation. I had to adjust the gauntlet a number of times because my thumb tip was getting numb and tingly - not sure if it is made wrong or if I just pulled it on too far. I was able to adjust it so that the numbness went away but a couple of times it worked back into the wrong position. Since it was an early morning flight, I was worried about it cutting off circulation while I was dozing.
I don't know how people can wear these for weight lifting and other activities. I feel so clumsy with them on. I'm tempted to not use them anymore and just rely on exercise to keep any swelling on flights in control.
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Blue I went to my BS last week. She said that I do not need one for my trip to Europe in spring. I hope she is right. I still have weakness and pain in the breast and arm. I attribute it to the Rads. I hope that I am never challenged with the dreaded swelling. Right now I am painting my back porch and kitchen. I scrapped wall paper off and have done a lot of over head work. I am not as strong as I use to be but still getting the job done. Hope it continues to be OK.
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Blue dasher I have Lymphoma you have to watch your salt intake also I never wear the gauntlet I also have a machine at home I use a hour every day to massage the arm I wear the sleeve in winter months not in summer and I do the weights and exercises what kind of exercises did they give you I am always interested in learning more and more and I take a water retention pill also. I don't let it run my life and I am hurting for carrying things yesterday and my flight too.
Maura
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Bold, you might ask for a referral to a lymphadema therapist so that the therapist can teach you the exercises for reducing the swelling if it occurs. You can also do them during the flight to prevent swelling. Other things that help are hydration, elevating the arm to heart level and moving the arm rather than leaving it in the same position for long periods.
Edited to add: I flew to Europe about a week after my high elevation trip and didn't have any swelling problems on the flight following that advice.
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Ladies, I am very happy to report that at 4 weeks post herceptin my hair has had an amazing growth spurt!!! Yes, there is life after the Big H!
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I finally rode my horse for the first time in months! it was so nice. My onc told me i was fine to do whatever i felt up for doing during my treatment. So go ahead and ride your pony DeeDEE!!!
I wanted to see what all of you thought of the news today about the mammogram news. Here is the link:
http://www.reuters.com/article/healthNews/idUSTRE5AF5OS20091116
I am going out on a limb here and say that this is financially motivated! How in the world can you go backwards on routine checks when they have made such a difference in survival rates and early detection!?!?!?!? I think that in financial hard times we should never suffer in our health care for it!!!
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Lisa1964, Cowgirl13, Californiacloud
Thanks so much for your words of encouragement. I won't go through this entire treatment without riding. I live in a rural area in NW Montana so short days (dark by 4:30) and cold weather were going to limit my riding any way, but I hope to be out there every weekend I feel well enough and weather permitting. At least to do some grooming and/or ground work. I don't know if I'll be sharp enough to continue drill team (can't risk injuring my team mates but they said I can show up any time for practice, even to help by critiquing from the ground, and I've got a spot saved for next year) but I see no reason why I can't go for nice, gentle rides. And I've continued my daily walks with my three dogs, one of which, two days before my first chemo treatment, I found out has a cancerous tumor in her throat. We'll have to put her down within the month. I truly believe she is taking my sickness from me and for that I thank her.
Keep an eye out for meteors tonight
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trishK Hope you had a great ride.
The mammogram news is upsetting. I guess mine would have been one of the 'few' lives that would have been saved. Because I am under 50, have no family history, no life-style risk factors, and am otherwise remarkably healthy. I am already upset that I skipped my 2008 mammogram on the advice of my doctor who, based on my history, recommended a mammogram every two years rather than yearly. The one year I skipped and the next year I have cancer. Not productive to dwell on it now, so I don't give it a thought. All I think is what can I do now to be well, and I have never doubted for one second that I will be well.
But why go backwards on early detection? Crazy.
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Trish....I saw that on the CBS evening news...really upset me too.
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Regarding the "new guidlelines" for mammographjyl. I have not had a chance to read it through. On the surface I AM APPALLED!. As victims and survivors, we need to study this and do what we can to give our opijnions and voice where it matters.
Dee - I am so glad you will continue to ride during yout tx. Yes, maybe you can't compete, but riding shuold be just fine.
I am off the study this stupid new "mammo guidelines".
Love to all my sisters!! Rock and Roll on!
Lisa
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HI Lisa1964, congrats on the final Herceptin! I stil have two full chemos left with Taxotere/Carboplatin/Herceptin (#5 is to be on 11/19/09 and #6 is to be on 12/10/09). Did your hair start to grow in at all during TC? I don't believe new hair is growing, but what is there still grows. I am sad to hear that I cannot expect it to start growing back until one year out of this...I won't be done with Herceptin until September 2010
.I do have a question for you, Lisa...does the taste come back after TC is done and only taking Herceptin? Or, does the awful pee smell, and all the other awful smells, hang around during the whole Hercpetin experience? I was hoping that after #6 TC, that things would start to feel more "normal" again...but I am getting the sense that all the SE pretty much remain, including hair loss, until the Herceptin is a done deal?
And yes, I was pretty upset at the Associated Press' article today:
http://news.yahoo.com/s/ap/20091116/ap_on_he_me/us_med_mammogram_advice
I see breastcancer.org has already taken a stance on this issue. Is it true that some women can have a larger sized tumor, but the growth not be as aggressive? Two Oncs told me that before my path reports came back, they intended to only do rads, but after the path came back, it was clear to them that I had to have chemo (as the cells were highly malignant)...it seems some people think that if the tumor is small, that there is little reason to be concerned. I did not have lymph node involvement either (I know that this is fortunate), but they made it sound like if any of the cells escaped during surgery, they could easily mets to another part of my body, which is why I have to have chemo with herceptin. Did any of you hear this to?
I wish I still had my horse...must be a wonderful thing to have, even when it gets dark at 4:30. I miss horse smell, hose breath and that soft muzzle that flaps together after whiffing the air... hugs.
So happy you are done... and Enjoylife, I am sooooo happy to hear your hair is starting to come back! Sounds like post Herceptin is key here???
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sanaisa - I had no hair growth during TC, I got my last TCH on Feb 9th and I saw new hair growth about 6 weeks later. My hair grew during the herceptin only, but very slowly. Now my hair looks like I had cut this way on purpose - not my style, but I can live with it. I am 4 weeks out from the last H only and the growth has really taken off in the past week.
The horrible TC taste does go away and you do get your taste for food back after the TC is done. I beleive Bold had the bad taste linger for a while. As for the odors, those too go away eventually. My experience with Herceptin only has been nasal ulcers, split fingers and feet, brittle nails, one partially missing toenail, thin/dry skin all over and easily bruising. That's the easy ones. The not so easy is nueropathy and severe pain of the feet, not so bad in the nads, but there; large muscle fatigue and pain, lower back pain and a general/all over body ache. 4 weeks out and the nsal ulcers are just about gone, the skin is still very dry, I only have 2 fingertip fissures left and they are about gone. The pain in the feet is a little better but I still ache all over.
And yes, I love my horses. I just cannot imagine going thru the past 15 months without the smell of a horse. Speaking of which, I gotta run, I am in the middle of trailer training 2 to get into and enclosed trailer; they seem to think it is an endless cave with no way out!
Have a great day ladies and be sure to log into the thread to stop the insulting new mammo guidelines!
Lisa
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Sanaisa - I just had my 5th herceptin only (following 6 TCH) and ALL my side effects have gone away after the TC was done. No fatigue, nothing. I just go get the treatment and go back to work. The ONLY thing I notice is that my pee smells funny for about 24 hours. But that is NOTHING compared to chemo. My hair is coming back very thick and it is fun watching it grow. I was 'going topless' 8 or 9 weeks from my final TC. It was SHORT but acceptable to be seen in public.
The first herceptin-only was scary because I was so conditioned to connect the chemo room experience with a rough week to follow. But now I just pop in, sit for 2 hours and then go about my day. I decline the benadryl so I am not sleepy afterwards.
I know this is not everyones' experience, but this truly is an individualized thing. Wait and see how it affects you. Also, I took L-glutamine supplements which are supposed to help with Neuropathy and I didn't have any. Who knows if the supplements are the reason or if I wouldn't have had any regardless.
FINALLY - I am floored and upset about the new recommendations re mammos. But EVEN MORE shocked about them saying self exam doesn't help and shouldn't be taught! And that even doctor's breast exam isn't helpful. So WHAT IS LEFT? Do nothing? This is highly upsetting.
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One final note- Just got the results of my 3rd MUGA scan. Went from 52 to 56! Good news. Almost made up for how many times they had to stick me!!!
Anyway, seems like the coQ10 I am taking is helping.
Good news for me today!
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Hi ladies! I finally took the time to get some recent up-close shots of my hair growth.
Here I am with all my wrinkles! And Oh My! I had NO idea I had that much grey until I loaded these pics. I will be taking care of that little problem TODAY! He He!
40 weeks PFC (TCH)
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Lisa1964 your so lucky to have that hair especaily after taxotore I have been off chemo August of 08 and herceptain April of 09 and I have about a fourth of that hair I use to have thick hair I have stopped crying about it and pray alot you look great.... oh yes I did notice that it does grow more after every trimming too.
Maura
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Lisa you are soooo beautiful. Really I am not just saying that. Good news of the hair growth spurt. I only have 2 left.
I still have some taste issues and as lisa said the achey lower back and hips and feet. But its livable.I am looking forward to mostly being N.E.D. and second asymptomatic.
In reference to the mamo issue. The fact that young woman have dense tissue makes the mammos hard to read. That is the issue as well as the radiation. I do not know. I have to have them now every three months. Gulp!
I would like to ask my sisters for some prayers for my nephew. He is 24 years old and went into cardiac failure yesterday. He collapsed on a lawn of a neighbor while walking down the street. He was not breathing and his heart had stopped. We are now waiting to see if, or how much brain and heart damage has been done. Ce could really use a lot of prayer. Thank you all.
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Bold... Your nephew is on my prayer list for sure.
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Bold Your nephew is in my prayers. Please keep us posted.
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Amy Great MUGA results!!!
I get a MUGA and a chest x-ray this Thursday for part of the drug study, My MUGA's have held steady at 64 to 67 this whole time.
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Bold~ Your nephew is in my prayers.
Lisa~ What trial is it that you are doing ??? Is it the neratnib one ??
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Lisa1964 - you mentioned split skin on your feet--i'm having all these little like slits on the bottom of my feet, under the heel--is that what you had? It sure creeps me out! Thanks.
Liz
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Bold--Your nephew is in my prayers.
AmyisStrong--It's good to hear about your experience on Herceptin alone. I think I can handle 4 months of the chemo--it's an entire year of the Herceptin that has me worried. And congrats on the muga scan!
Lisa--Your hair looks great. And funny how scary those trailers can be for some horses.
Sanaisa--You are right there is nothing like the smell of a horse. I love looking out my window and watching them run and play in their pasture. And by the time June comes around and it is light out until 11:00 p.m. I'll be ready to ride for real--nice to have enough daylight to go on an 8-hour ride after work.
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So sorry to hear about your nephew, Bold. I'll keep him and all his family in my prayers.
Lisa, your hair is amazing!
Becky
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Jaimieh - Yes, I am doing the neratnib trial. This week is all the preliminary testing. I don't start taking the actual drug/placebo until Dec. 2.
Cowgirl - Yep, splits on the soles of the feet and the tips of my fingers. My feet got so bad at one point that I had to keep padded moleskin over the splits so I could walk. I still have 2 split fingertips courtesy of my final H only.
Thanks for all the nice comments on my hair.
Have a great day everyone.
Lisa
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I can not thank you enough for all the prayers. Today we get the results of EEG. He was down for 11 minutes. This is critical as the brain function might have not received enough oxygen. So your continued prayers are needed.
My feet are cracking also. I find that moisturizing is the most important other than hydration that I can do. I just wanted to remind everyone to take your calcium and Vit D. Everyday! I would also suggest that CoQ10 and fish oil are very good as well. Is anyone finding any other supplements helpful. And of course veggies, veggies veggies!!!!!!! And CHOCOLATE!!! Well maybe not chocolate but hey.
XO
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