Taxotere, Carboplatin and Herceptin
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I should begin by thanking you all for being here; for your compassion, invaluable knowledge-sharing, suggestions and giving me a place to go where everyone "gets it."
I, too wonder what the magic number of txs are. My onc prescribed TCH every 3 weeks for 8 weeks followed by 17 txs of Herceptin alone (every 3 wks). Radiation is another thing; rad onc prescribed 5 days/wk for 7 weeks once I've completed chemo. I haven't made up my mind whether I'll do rads yet. Coincidently, my BS directed me to radiation after the partial masectomy and then chemo, but the rad onc said to do chemo first! So I started out with an onc who inj'd me w/Andromyacin, taxatore and cytoxan and promptly left the country for his annual 4 week vacation w/no onc to cover him! Got a 2nd opinion, found out about the risks of Admomyacin so decided on TCH and the new onc...
My 5th TCH tx was Jan 4th. I really haven't been bouncing back as well since Dec 14th (tx #4). The awful diarreah continued most recently, for a solid month causing the need for a colonoscopy last Wednesday. My txs are on hold until these extremely painful rectal/colon SEs are dealt with. Colonoscopy revealed proctitis and colitis. I am finally experiencing some relief the last 2 days but as such, am having a hard time deciding whether to continue the txs. How many are enough? I guess it's all trial and error and we don't have the gift of hindsight when we need it the most. Even with the short break from chemo (I should have had it Jan 25th) my eyes still water constantly, I can't see a THING even though I've never had to wear glasses in the past. The muscle weakness and pain in my legs makes me limp and on 2 occasions when I made it to the elevator, I had to sit down! I am 41. Quality of life has been holding at a steady zero. Working thru this has certainly proved to be a challenge. This has been a train wreck of a ride. I just needed to introduce, to share. Thanks for reading...
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cancerwarrior - I also struggled with the number of treatments. I started getting neuropathy after the first treatment and it got worse with each treatment. I ended up stopping at 5 treatments and then continuing with the herceptin for the year. I would suggest that you talk to all your doctors frankly about it. I don't know if it was the right decision or not but I still have neuropathy and it's over a year since I finished chemo so it probably would have been worse if I would have done number 6. There are some studies out there about the number of treatments but I don't think we have the answer yet.0
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Omaz don't give up on that neuropathy getting better. I have it in my left heel, still, over 1 year PFC. I remember my NP telling me it takes a long time for neuropathy to resolve. Yesterday it snowed and today is very cold. It tends to act up in this kind of cold and/or damp weather.
I now am more accurate than the weather guy
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Thanks lago!0
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Yeah Omaz,
My Onc prescribed 50mg of B6 and said it takes about a year for a cm of nerve endings to be repaired, so I should plan on being on it for several years.....but you know what? I don't have any of it now. None. I stopped taking the B6 when it went away.
I'm getting nerve/feeling back in my MX side. I had a skin sparing and the portion of numbness used to encompass the entire breast area, now it is down to about a 4 inch by 4 inch square...and I feel lots of burning on and off all the time...it feels like a sunburn...then goes away...I dunno.
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Cancerwarrior Are you saying that you are scheduled for TCH x 8 or am I misunderstanding? Seems like most of us have 6. A month of diarrhea is awful-I'm so sorry you've been dealing with that:( The gumby legs and Taxotears are pretty much the norm in the last few rounds of TCH. It doesn't help that you may be more anemic by now which adds to the overall exhaustion as well as the burning muscles/heavy legs. I stopped using the stairs at work during the last few cycles and I remember that the walk to my car after work felt like a million miles. I was 41 as well and was just getting by during chemo-still don't know how I actually worked through it considering how I felt. Whatever you decide regarding stopping or continuing, please know that you will feel better within the 2 months after your last chemo. I wouldn't have believed it but it's true. Those Taxotears will dry up and the gumby legs will go away. You're going to bounce back:)
Omaz I'm optimistic about the neuropathy too. Mine didn't start until after chemo was over so it hasn't been as severe. My hands still go numb at night but my neurologist insists that nerves can repair themselves given time if the nerve sheath was not severely damaged. He explained to me that the nerve sheath is like the insulation around electrical wiring and when it's damaged (by chemo) then pain (short-circuiting) occurs. He has me taking B6 and B12 to help repair the damage. I've noticed improvement. My numbness is less severe and less frequent now.
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Tonya I've notices lots of sensation in my breast skin too. If my PS didn't numb me for that tattoos this past Tuesday it wouldn't been a bit unpleasant. I did feel the lydercaine shots… granted not like I did when I got the sentinel biopsy but I did feel them. My boobie prizes are a little sore to the touch in the lower poles… they have that PMS retaining water feeling.
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dragonfly - I am glad your hands are getting better. I have numbness in my finger tips and toes and parts of my feet and ankles but everything works. I have developed a pressure pain thing with my feet since last summer and they hurt when I walk on them. It's not too bad except sometimes but I haven't been able to get back to longer hikes yet. Still walking the hills in the evenings, pain or no pain!0
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Omaz, good for you for walking. I don't get out of bed if I'm not at work. Used to be due to feeling like i was hit by a mack truck but this weekend is about harboring that energy for Mon thru Fri...
Dragonfly, yes scheduled for 8 treatments not weeks. oops. It does seem most have been scheduled for 6... I told my onc on Jan 25th that I was still in so much pain and it was not getting better. (Then I reamed him for not returning my call the FRIDAY before... Its bad when your onc leaves you to fend for yourself all weekend without a return call... uugh!) Anyway he says, "I hear ya. Your not tolerating it well. We can stop" !!?? Really?? 'Cause I was really wanting direction on why we should keep going. I needed motivation that it was worth it to keep those blinders on and continue my "race for the finish." I was looking for reassurance that it would get better. So thank YOU for giving me that
The end result is that he gave me "permission" to go ahead and deal with the anal issue(s) and come back to see him when I was done. I'm wishing I chose palliative care in the sense of a modality approach to treating my cancer. I had to find my own gastroenterologist! I want a team of docs to talk to each other (and me), not JUST me. I don't know a thing about medical stuff. I truly feel lost and alone. Not to mention depressed as hell but hey, this too shall pass (I hope).
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cancerwarrior your onc didn't have a recommendation for a gastroenterologist?0
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cancerwarrior I think your Onc is related to mine and that's not a good thing:( Again, I'm so sorry you are struggling with this and not getting support and information from your so-called providers. Let me share that I'm normally a very outspoken advocate for myself but BC/chemo knocked the wind out of me last year. I won't even go into the things that have happened with my onc but she was unhelpful at best and even hurtful at times in things she said to me. Yet, I didn't have the extra energy to fight that battle too so I just put up with her stupidity to get through the necessary treatment. I have actually minimized my interaction with her which is really sad (thankfully my other doctors are wonderful).
In retrospect, I wish I had just found a new onc and that's my point to you. It might be worth your while to get a new onc now. I know how difficult that may be when you don't have an ounce of extra emotional (or physical) energy but you still have a long way to go and you need an onc who's available and is actually giving you a rationale for your treatment. I'm so happy that most women here seem to have wonderful oncs and that's the norm I guess but unfortunately there are times when it's not so great. I'm onc shopping now and I've also asked my BS to never refer anyone to my onc again. Don't feel like you have to put up with this!
And, there is a lot of support here so I'm glad you are posting and venting. The women on this board are the reason I got through chemo with my sanity:) They were here to hold my hand and reassure me that life gets a lot better and it's true. Chemo is a rather dark time but there's light ahead...
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Dragonfly I agree but just didn't want to say it. There are many good oncs out there. Cancerwarrior your current one may be good but bedside manner not right for you. If I needed to see a specialist my onc/NP always had a recommendation unless I already had a relationship with one already. (Also found most of the time they recommended women. My onc is female.) I also had phone numbers for paging if there was an issue. I never had to wait over the weekend if I really needed assistance.0
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Lago,
My TE is tender in the southern region as well.
I also feel the needle go for fills....painful! I remember the good ol' days...when a girl could get a fill with no needle pain! lol
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Hi Ladies. I had treatment number 4 of 6 on January 31 and ended up in the hospital by Sunday for four days. I have never been so sick! I cannot imagine doing this 2 more times! When I finish the hard stuff I still have Herceptin until the end of November. It is supposed to move from weekly to every 3 weeks, but I worry about getting a triple dose. All of it is very scary. I can see the light at the end of the tunnel though. Only 2 more! But, after my last one, I am terrified. My counts all dipped low and I was in so much physical pain I thought I might die. I hate that anyone has to go through this, but I am glad to know I am in it with wonderful people who listen and respond with great info. Much love to you all.
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slgarcia do you ge nuelasta shots after chemo? I always got Herceptin every 3 weeks for 30 minutes with no issues. Some of the ladies here got a slower drip of Herceptin when they had issues (longer than 30 minutes). You can ask them to slow it down.0
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Thanks so much for responses ladies. I'm running to work but will check back in this evening and update. Hope you're all having a great day!!
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slgarcia - I don't know if it helps, but I had the same thing happen to me on treatment 4 of 6. My counts dropped so low that my blood pressure also dropped to 80/60. I passed out in my bathroom 4 times on day 6, and my husband couldn't revive me for almost a minute. He called 911 and the ambulance took me to the hospital. I spent 2 days receiving fluids, potassium, and magnesium as well as anti-diarhea drugs. The good news is that the next 2 rounds went ok. They said that sometimes the dehydration with the low blood counts can just send us in a tailspin. I don't wish that experience on anyone! I made it through after that and you can too.
My advice is that if you get to the point of needing a blood transfusion, really consider it. I refused due to the "ick" factor, but I agreed after the next treatment bottomed me out again. It helped me feel better so much faster and kept my treatments on schedule.
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Hi lago. Yes I get the neulasta shots after every hard chemo and have severe bone pain. It is awful. We have tried slowing down the herceptin, but it does not seem to make a difference, but I am on single dose right now, so maybe when I move to every 3 weeks it will make a difference to slow it down. ILBOYSMOM, sounds like you had a really rough time. I did not pass out, but felt like I was going to. I have not needed a blood transfusion so far, and hopefully I won't. Thanks for the encouragement ladies!
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slgarcia the claritin isn't helping any?0
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slgarcia my first neulasta was awful. I also took Aleve but check with your onc because it can thin your blood.
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Hi Ladies. I have not taken claritan. ONC has never mentioned it. She prescribed norco for it. I have taken motrin as well. Thanks for the info!
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slgarcia - one regular Claritin (not Claritin D) an hour prior to Neulasta, then every 24 hours for a few days. I found the ones that dissolve on your tongue to be the best - one less pill to take.
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SpecialK.....What is it supposed to do?
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slgarcia - The claritin is an antihistamine and I think minimizes the swelling and histamine-related inflammation (?) in the bone marrow in response to the neulasta and that reduces the pain. Is that about right specialK? Here is a link to a clinical trial officially testing the effect. LINK0
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omaz and slgarcia - omaz, yes, what happens is that the Neulasta stimulates the production of white cells in the marrow, especially in the largest bones like hips, pelvic girdle (accross the back) and thigh bones. As that expansion happens there is some edema, which is fluid from swelling. The antihistamine property in Claritin (others have used other drugs, but the most common one is Claritin) helps reduce that inflammation and reduce the pain. That is the long-winded blowhard version of what omaz said above, lol!
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Thanks Ladies! I will talk to my doc and make sure it is okay for me to try. Gotta make sure it does not interfere with any of the other meds I am on. Ya'll are so wonderful!
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It should be fine, and I would be very surprised it your onc said no, but you definitely should get the OK first. Hope it works well for you!
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TCH + peas = yucky
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Judy, My first treatment is tomorrow. I only agreed to this TCH because my MO said if I can not tolerate the chemo I can quit and continue with just herceptin. I am 73 yrs old,but if I was 44 I would bite the bullet and continue with treatment no matter what..
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I had my first post treatment followup with my MO yesterday and it was an eventful one. I went armed with a list of questions and my DH:) Keep in mind that in 30+ visits to my infusion center I've only seen my MO a total of 5 times including the initial consult (that's only part of why I'm unhappy with her).
The port-she basically told me to do whatever I want. Done-I've scheduled to have it removed by my vascular surgeon on April 11th which is the soonest date he has available.
She wants me to do one more MUGA scan so I'll do that next week.
She does not think my significant joint issues are from Tamoxifen and agrees with my RO who thinks I may have something else going on like an autoimmune problem. I'm going to wait it out and if it doesn't get better I'll go to a rheumatologist.
She didn't weigh in on what to do if my period comes back until I pushed the issue. She initially said "you're taking Tamoxifen" as in you're covered. Ummm, I don't think so. When I pushed a bit she then discussed that I should consider Lupron shots or ovary removal if my periods resume. She doesn't seem very worried about the impact on my prognosis. When discussing ongoing sexual SEs she also said if it doesn't resolve that I could consider using an estrogen cream-WTH?!?! Not on your life. I had already asked my RO her opinion and she said absolutely not because there is increasing evidence that the estrogen creams are absorbed vascurlarly at far higher amounts than they previously knew.
Aside from her lack of communication, she is rather "cold" and seems to view my case as not being rather serious in the scheme of things judging from a lot of comments she has made that are very minimizing (for ex., she's the one who told my ortho Dr. that she "doesn't think she has BC anyway" and to give her the benefit of the doubt she probably meant anymore but still it's a rather cavalier attitude toward Triple Positive).
I've got my mojo back and I've had it! So, at the end of the visit I had a very awkward discussion with her and explained that I'd like to switch doctors within the practice and be assigned to her partner because I just don't have good rapport with her. I was very assertive but nice and said that I feel so strongly about it that if we can't make the change I'd have to consider going to another practice which I don't want to do. It was difficult to do but I feel so much better. I have to wait to see if her partner will accept me as a new patient for my next followup in 4 months. I feel very empowered. I should have done it sooner but better late than never.
Thank you for letting me vent. I also thought this may help someone who is struggling along with an MO who is not the best match. I've gotten all the right treatment in the past year but it felt like it was being administered from afar with no relationship/communication and that's just sad. Make a change if that's happening to you...
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