Taxotere, Carboplatin and Herceptin
Comments
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Cloud. Ask your lymph-d therapist about a hand gauntlet instead of a full glove. My persistant swelling is in my wrist and hand, but if I wear the gauntlet (fingers exposed) while doing heavy physical activity any previous swelling goes away and no new swelling appears. And with the fingers exposed I don't even know the garment is there. Good luck. Lisa
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Lisa,by all means party! I am not leaving completely but easing out slowly. I will work Mondays and a couple of Sat. a month. I just can not work with the 19 yr old because she is so rude and will not listen. My boss has chosen to keep her in her position instead of me (she has been there 1 yr and I have 10 yrs) and I suspect it is because he is afraid I will get sick again. I do feel this is discrimination though but will not make a big deal of it. I want to quit but the money would help right now. I will trust in God to lead me and not look back. They will find out the hard way what I have been telling them. Or maybe not!
Back to the swelling in the arm. My aunt had lymphedema but only in left side. It was the first breast she lost and after the other bc she was afraid she would have it in both arms but does not and it has been a few years. she goes to a therapist now. She still has to wrap her arm and massage it. I wish there had been more of that training for her a long time ago. I say if you think you are going to have problems or just want to play it safe and can afford it go to a PT. I have to lift in my job but I am right handed and the lymph nodes were taken from the left side. I do take precautions though. No BP,needle sticks etc. I already have hand swelling because of arthritis so no more from any source please!
Cloud I have problems with my red blood counts still and it has been a month now since my last H and Nov 2008 since my TCH. I have a friend who has been considered cancer free but is still battling the blood count problem now for over a year but he had a stem cell transplant of his own radiated cells. I hope the best for you, just wash those paws and keep them away from your face. This H1N1 is not anything to play with and if your white counts are down you can catch a lot of other stuff. I am thinking about you! Keep us posted.
I am wishing the best for everyone and I hope those who are going through the TCH are having few SE. keep drinking that water and come here for advice. learn what you can and ask the Doc and Nurses for help too.
Carolyn
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Cloud, my WBC and neutrophils came back up by the test one month after chemo and have stayed fine. Actually, they first went to the high end of normal and have now settled down a bit. RBC hasn't been quite as cooperative. My RBC and HGB have been running at mildly anemic since chemo. The test 4 months post chemo was the first time they were in the normal range and that was just barely. Then the next test they had dropped again. That was kind of disappointing. But at least the anemia hasn't been bad enough that I feel it - the tests are just below normal.0
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Thanks for all the great advice ladies,I think because I haven't had any problems with my arm I will be ok it is a short flight and yes the higher altitude we live with everyday, me not so much I am on the eastern plains but going to the Mile High City has never bothered me, so I will be just fine I can't believe it would swell up now and give me trouble I will do as Lisa suggesting keep and moving and massage my arm. ccbaby Good idea getting another opinion when you can increase your odds from 5% to 26% that out weighs any bad to being good When my Onc told me I could go from 74% to 93% chance of being cancer free after chemo,Herceptin,and rads It was a No brainer for me. Cloud I feel you Sista my nails are still a mess 15 weeks PFC my right eyebrow is half gone I have been using my Nioxin shampoo on it And I would love to have my bangs growing faster,Iam ready to be bandana free!! then I look on the bright side and glad I am on the homestretch to being done!! 0 -
Just wrote a post that was deleted by accident. Frustrating and I don't have chemo to blame.
Here goes again. Re: lymphedema. I suffered 3rd degree burns and had skin grafts on my upper right arm and underarm about 10 years ago. Following surgeries I had physical therapy and wore acompression garmet consistenly for a year. I also lifted weights and had massage. I never had any problems with lympedema. Fast forward 10 years, I find a lump on the same side and have surgery with multiple lymph nodes removed. Chemo and 36 rad treatments. Needless to say I was concerned. I have been following same regime as before (no PT) but lifting light weights, and massage. No problems. I agree that no needle pricks, blood pressure of tight jewelry should be applied or worn on the affected arm. I feel sorry for those Sisters who have gone before and were told to baby their arm.
Bold , in answer to your question re follow-up care. I see surgeon and rad onc every 3 months. See onc every 3 weeks after having bloodwork. I have a MUGA after every 2 herceptin treatments as my infraction rate was too low following chemo and I had to lay off for a month. I will finish Can't wait!!!!
I am glad to hear that everyone in my posse is doing well! to those of you going thru chemo...hang in there. It will soon be a dim memory and you will be on the road to recovery.
Lisa, are you coming up this way soon?
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Thanks everyone. I am very much at peace with going ahead and doing rads but I just found out today from my PS that he would like for me to wait at least 6 months after rads to do exchange from expander into implant. I have already had this expander now for 6 months, which is very uncomfortable, and the thought of having to keep it another 7 1/2 months just makes me sick. He said he would take a look at my skin 3 moths after and 'consider' doing it then, but it is probably doubtful. Seems like we all have one set back after another....
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I sent a message to my surgeon and my medical onc to see what they thought about lympadema and flying and whether I needed a sleeve. She also said that if the sleeve doesn't arrive before my plane trip to prop my arm on a pillow part of the time to keep it at heart level.
My surgeon said that I was never at much risk of developing it because he didn't take that many nodes and I didn't need to worry about the flights. My medical onc just gave me a referal to one of the lymphadema therapists for a consultation and measurement for a sleeve. The first appointment available was in a week and a half. Even if there is a cancellation next week the sleeve probably wouldn't arrive before my trip to high altitude.
I talked to the therapist on the phone. After asking various questions, she felt that if I was going to have lymphadema, there would have been some sign of it by now. She says it normally shows up by now. And that I've been flying without any sign of problem before also means it is unlikely that I'd have a problem.
She will measure to check whether there is any swelling that I haven't noticed. She will teach me how to do the massage and also exercises for on the plane. She said I should try to move around when I'm on the plane and not keep the arm in one position all the time. She also said that she doesn't recommend using compression garments if I haven't had any lymphadema symptoms. Wearing them when not needed can trigger problems.
She also said that heat could increase the swelling so if I have a problem during the trip and the weather is hot, I should try to stay in air conditioned places.
Based on what they have all said, I'm not worried that I'll have a problem. I'm flying business class so I'll have room to move my arm around and I'll be sleeping leaned back so my arm will be around heart level most of the trip.
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Maja - My trip up your way for August got nixed due to hubby's schedule, but I am still making plans to get up there mid September to suprise my sis for her 50th birthday. Sis is just over the river in Franklin Furnace, OH and I will be flying into Huntington. There is a great flight that leaves Sanford, Fl (just north of Orlando) straight thru to Huntington for $79 round trip if you fly Thursday in, Tuesday out - either direction.
Lisa
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Blue - there are also some simple stretching exercises that you need to ask your LD therapist about. Most can easily be done while sitting in an airline seat. The simple stretches will help keep the blood flowing during your flight or when just sitting at home or work "desk tied".
I am thrilled with my LD guy. I am also glad that I caught mine early. My mom had BC with radical Mast. and she had HORRIBLE HORRIBLE lymphedema on the affected side. Mom was a very tiny, petite lady (size 4 shoe) and her left arm looked like it came off a B rated wrestler. *That was 7 years ago, she did not get good LD counceling. She was given a compression garment but that was it. She was never taught to wrap the arm, do the exercises etc.
LD is not a given, but it does exist. Exercise and use common sence and all will be good with the world.
Lisa
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Thanks for all your comments regarding low blood counts after chemo. I did a search of this site and found several comments on this subject. It seems that low blood counts can continue for years--one lady stated 2 years and 8 months before the levels righted themselves!
Since chemo ended I have been in a state of limbo. I was told that I should not expect to jump right back to my pre-chemo vitality. I was told that my body had another three to four month fight to heal from the chemo. I was told to read books and watch movies. Reluctantly, I surrendered my plans for a summer of robust health and fun. I agreed to take it easy to allow my body to hea;l; however, I felt like an injured solider whose warrior days had ended, but whose life of freedom had not begun.
After reading about the gal whose counts were funky for over 2.5 years, I realized that I have been waiting for my healing--waiting for my blood levels to return to normal; waiting for my stamina to return--but the proof of healing is continually delayed. For the past two months I have been acting like an injured solider waiting for a bus ticket home. Last night, I decided "Screw the bus, I'm gonna walk!"
Summer is over; school is back in session, and I am moving on. Some days I may crawl, some days I may run, but every day my mind, body, and spirit will experience some level of healing. And, every day I will experience joy.
Cheers and blessings to us all!
Cloud
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Lisa- I was mistaken about a glove; the therapist recommended a gauntlet. She will take measurements next week.
Carolyn- I am very careful about handwashing. I wear gloves when I am out shopping. At work, I am continually washing my hands and wiping down my work area after each student.
Paula - I may have a nail fungus as well. My PA suggested that I soak my nails in a mild bleach water solution. I have also read about a vinegar solution, and Vicks Vapor Rub. I am trying them all, including betadine solution. My eyebrows are growing in all the places I pluck! I am saving on mascara because I have no eyelashes; however, I have really improved my eyelining abilities. For hair growth, I just read about castor oil. Not sure if I will try that or not. My hair is growing, but I may continue to trim it until I have an even covering of stubble. The students seem surprised that I still don't have hair, but they are kind and will enjoy watching it grow. I was thinking about challenging all the classes to pick a date that I will have a full head of hair and offering the winning class $50 to their fund raising account.
Christy- I am sorry that you will have to wait for your exchange. In the meantime, I hope you will be able to come up with some ways to decrease your discomfort.
Dasher- Sounds like you will well prepared for your trip.
Cheers!
Cloud
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Thanks so much Cloud. I had low WBC the 3 weeks ago when I went in for my first only Herceptin treatment. I will go in on Monday to find out if it is up, otherwise I won't be able to start my rads yet. I hope your blood counts go back to normal very quickly.
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Hi Ladies, you all have been encouraging with your experiences and support to all who read this thread. Can anyone tell me if they have dealt with not being able to fall asleep at night? I had 3rd tx this past week and have been having awful times of falling asleep at night. It is usually taking me about 3 hours or so once I go to bed to finally fall asleep and then morning is only 5 or 6 hours away and to make things worse school is starting next week so that means we will all have to be up earlier in the house which means even less sleep. Can this be a SE of chemo that I did not experience before and maybe the build up of the drugs?? Not sure what to do but awfully tired each day!
I am going to have an evaluation done on the left arm for Lymphedema since I cannot get any straight, informative answers from all the doctors I see. Seems as if they downplay the whole possibility of getting it and that I should be able to do anything I want in using that arm. Problem has been when I have done the physical work I do, I end up having some problems in the arm with pain and just some slight swelling.
Thanks for all your help and posts to get us all through this, one day at a time!!
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Blessedby4, is it on the nights when you are taking steroids? Steriods can make it hard to sleep. I sometimes got very little sleep on the first two nights of the 3 that I took steroids. By the third night I was so tired that I did a little better but still had a shorter sleep. Since I wasn't having any reaction to the chemo drugs in the first couple of days, my doctor let me cut the decadron from 8 mg twice a day to 4 mg twice which helped a little. I didn't want to take another drug to make me sleep.
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Blessed: Bluedasher is right. Steriods wreck havoc on your sleep, but so does the stress of what you are going through. I hate to say it, but Tylenol PM has become my friend, not on a daily basis, but if I'm about an hour in and haven't fallen asleep, I'll take two. No matter how you do physically, the mental game can be worse.
Good luck! You can get through this!
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bluedasher: I knew the steroids can cause lack of sleep but this has been happening even since I have finished with the steroids. So it has been 4 nights since no steroids and still wide awake at night. This is why I found this kind of strange since steroids are done, maybe it is just new SE's with tx #3!!!???
Guess I should call the doc and ask him if I can take some Tylenol PM.
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Blessedby4--I had a terrible time sleeping from my diagnosis through my chemo. I took Ambian every night, and it was great for me. I am now off of it and sleeping like I normally did. I decided that getting a good night's sleep was really important during chemo, and my Onc agreed. I finished chemo the middle of June and am now getting Herceptin every 3 weeks. Anyone have really rough places on their elbows and knees on Herceptin? Also, I am still on antibiotics for the cellulitis in my mastectomy breast--had exchange surgery June 17th. The redness and warmth is better, but the breast is still really firm.0
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Helen - I have noticed a rough patch on my elbow that I never had before. I didn't think much about it but maybe it is Herceptin related. Glad you mentioned it. I am just using moisturizer (when I remember).
Amy
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Amy: That is really weird! Mine is just below my elbow on the back of my forearm. It doesn't look different, but it feels rough.0
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Blessedby4--I've been using Tylenol PM, too. Helps a lot.
Becky
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Blessedby4: I had my last TCH Feb 9, 209 and I still have trouble sleeping. I think is the combo of herceptin, tamox and instant menapause.
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Thanks everyone! I went and got some Tylenol PM and have taken it and now awaiting sleep. Hope it comes soon!! I think I will ask the doc about it this week when I go in for blood count check!
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Greetings! I just had my first treatment with TCH August 7. Fortunately it was pretty uneventful. My question is- have any of you had this regimen without Decadron? I am diabetic and it really caused more problems for me than the chemo did!
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Hi,
I am not an expert but I think you probably really need the Decadron to prevent (or lower the risk of) an allergic reaction to the Taxotere.....
-Helena.
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Hi, I'm not diabetic currently, but I did have gestational diabetes last year during my pregnancy, so I will always have an increased risk of developing it again. My oncologist told me I would have to be monitered while on Decadron because it can cause the blood sugar to go wild. I don't know if there are alternatives. I start my first TCH on Friday (8/21)
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Helena67 is right--Decadron is used to help prevent the edema that Taxotere can cause. I wonder if your doctor could cut the dosage in half once it has been determined that you have no sensitivity or tendency to swell in response to the Taxotere. It wouldn't hurt to ask.
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Weety, I had gestational diabetes on my first pregnancy, but that was more than 30 years ago and no sign of blood sugar since, even on the subsequent pregnancies . I didn't think to mention it to my onc but I didn't have any problems during chemo.
Dharmamama, I was getting 8 mg Decadron twice a day for the first couple of chemos and wasn't having any reaction to the Taxotere so my onc let me cut the dose in half for the rest.
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Ladies Just a quick post Thanks to all the great thoughts and prayers and Bold your amazing ability to know ps I love you for that!!! I am NEGATIVE for the gene!!! I am celebrating my butt off!!! How wonderful for my boys ,my bros and my cuzs!!! Life Is So Good!!! God is Amazing in his Grace, Thank you all again for always being there for me!!!! 0
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Weety 911:
Let me know how your 1st tx goes. I have the same starting a week later - I just had a child a year ago too. Let me know how you do it with a small child. I am still nervous because I have to go back to work soon and will start chemo. UGH! Dreading the hair loss.
Why did they give you Decadron? I haven't heard if I will get that - just TCH. I am going to look that up now.
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Hi Jennsdog,
Wow, I guess we'll be going through all of this together. My baby is now 8 months old. How old is yours? Do you have any other kids? I have 2 others-age 8 and age 5. They are pretty independent at this age, but taking care of a baby has been one of my biggest concerns with this whole chemo thing.
I'm sorry you'll have to work during chemo. I won't be able to work--I'm a kindergarten teacher so runny, snotty noses aren't exactly going to help me out!
I read more about the decadron in my taxotere pamphlet. It sounds like it is required to use with the taxotere. Your doctor probably just didn't mention it because its part of the "pre-meds" they give you. I don't know what else we'll get. I guess we'll find out soon enough.
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