Weekly Taxol group
Comments
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pcranky - You are so welcome! And I'm sorry we are unlikely to meet.
They actually didn't propose icing for me -- I have Reynauds, which would make icing pretty awful -- so I do not know first-hand how they manage it. I would guess they provide the tools, but perhaps it's worth calling your nurse?
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Thanks! Me too.
I just did, and she told me that i could request ice from the nurse who has it on hand. I need to get better at asking quesitons and not worry about bothering people
I'm also going for a tour of the infusion center.
I'm sorry we aren't going to get to meet as well.
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pcranky, I thought of one thing I wish I'd figured out sooner at Perlmutter. I don't know if it's just my doc (Dr. Speyer), or widespread, or even if I slipped through the cracks and it's just me. After the first appointment, I had to arrange all the future ones myself through his secretary, separately from what was said in the follow-up appointments with the doctor. And I didn't realize until half-way through that I could do that 4 or 5 weeks out into the future instead of one week at a time.
Good luck!
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Interesting! I go to Dr. Meyers - Her NP arranged my first 12 appointments for me after we decided what we were doing. they just all appeared in MyChart
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Oh, that is so much easier. I am glad!
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My appointments were done on a weekly basis with MO staff. As an active retiree, I was happy to be able to say - "next week I need to come in the morning" or vice versa and I always got the general time I requested. I can see where having the whole 12 weeks set up could also be helpful though especially for those who are trying to juggle work or child care.`
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hello.
I have completed 4 dose dense AC, and 3/4 dose dense taxol. I am only scheduled for one more this week. I have tolerated the side effects thus far, but this last taxol was the worst yet. Usually by day 7-8 I feel relatively “normal” and have minimal SE. however this last one knocked me for a loop. Today is day 11 post taxol and I still feel horrible. Major fatigue, headaches, very short Of breath, burining pains in my legs and my feet are numb. I had always planned tofinish the treatments, but there is no way I can put my body through this again...
also, I have gained probably 10-12 pounds since chemo started. Is bloating of the stomach a side effect? I know I have gained a few pounds but my stomach seems much bigger than everywhere else. I’m hoping it will go down...
Any advice greatly appreciated...
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cccmc2,
I am so sorry you're going through dose-dense AC and Taxol. Is there any way you can take a break? Sometimes taking a break really helps. It lets you see the glimmer of hope. I had 4 dose dense AC and 12 low dose taxol. After 4 AC and 1 taxol, I was knocked out. Literally. My BP dropped and I was rushed to the ER. So take a break if you need one.
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Hi all. Had my 4th Taxol Thursday. Feel good except this last week hair is going. It is falling out in clumps. I have been taking everything in stride but am having difficulty with this. As much as I prepared myself, still not prepared. My scalp hurts so much, is this normal? Also when does your hair start growing back, after all treatments were completed? Thank you ladies.
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Volleyballmom—I’ve been keeping a close eye on hair regrowth posts. I started seeing a little bit about a week and a half after my last Taxol but it is slow going (and being blond it just doesn’t cover the scalp like darker hair would). It seems like a lot of women have enough after 12-ish weeks to ditch the caps/scarves/whatever. I’m hoping that holds for me—I happen to have a vacation planned for 12 weeks out and I am so over these baseball caps. . .
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Volleyballmom - my hair came out in clumps after #3, I think, and what really helped the scalp pain was a cool shower -- instant and lasting relief. It has continued falling out, but I still have a thin head of hair up there. Also some regrowth already (I'm on the tenth week) in a different texture. I hear I will loose it all again during AC, so I'll probably shave it again soon.
cccmc2, so sorry it's hit you hard. You might try Bio-K, or another serious probiotic -- it really has been helping make digestion comfortable again for me, including bloating and abdominal discomfort that I might not have identified as digestion-related.
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Hi all- thanks for sharing your stories and insights. It’s really helpful. I’m doing 12 rounds of weekly Taxol. Did 3rd one this past Friday. Really wiped out Friday afternoon and Saturday. Had to buzz my hair Saturday morning because it’s just easier to deal with the fallout that is seriously happening. My head is itchy and really tender to the touch. I guess it’s just part of the unending surprises this has brought me. Overdid it today so definitely resting this afternoon. Hard to describe the fatigue to family but they do understand. Hang in there everyone!
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cccmc2 - I noticed that you mentioned shortness of breath after taxol and wanted to tell you my experience. I sailed through the A + C - maybe one day of tiredness probably due to steroids going away. After a dose of taxol I felt like fire was coming out of my fingers. After the second one I developed severe shortness of breath and ended up with atrial fibrillation. Two cardiac conversions and meds that I'm still taking since Jan. I finished the taxol but I thought it was a horror show. I still have significant neuropathy in my finger tips. To top it off, when I had the partial mastectomy and node removal the pathologist said that the tumor had not responded much to the chemo. So, all for naught. Bummer.
Gussy
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Hi Ingerp - I am 7 months past my last taxol (Jan 25) and I still have to wear my wig in public. My hair is only about 2-3 inches long, very curly and unruly, which it wasn't before. It's getting there but I sure thought it would be in better shape by now. I finally decided to try Rogaine and see if that speeds things up a bit.
Gussy
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thank you for responding. I hope the taxol hasn’t affected my heart! I have had 2 echocardiograms which were normal. I plan to ask my MO about this on Thursday when we discuss if the last taxol treatment will benefit me more than hurt me.
Thank you
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cccmc2,
My MO stopped my taxol early due to neuropathy pain in my surgery area, I completed 9/12. My pain was continually getting worse with each trmt and I just wanted to get them all done, but was ready to stop and listen to my body..which was saying it had had enough. MO decided they were doing me more harm than good...so it was a relief that we agreed. Good luck on whatever you decide.
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Calee65, thank you, I have a feeling mine will do the same
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Gussy--sorry to hear that. Someone <maybe on another thread> said that sometimes a dermatologist can help with hair re-growth. FWIW, I had seen some short hairs on my legs but just yesterday noticed random longer ones (like on my head). I'm thinking needing to shave my legs is some kind of progress.
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Gussy - Thanks for posting your experience! I just had my 2nd echo this morning as the nurse heard a heart murmur before my Tx last week which hadn't been there before. Should hear later today on the results. I have been experiencing some shortness of breath and my resting heart rate is significantly higher (sometimes 100+) since my 2nd AC infusion. Had my 5th Taxol last week. Bit nervous because I want to get all of the Tx's in but not at the risk of damaging my heart!!
Kim
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To all of you who are months post taxol or a and - has anyone experienced joint problems? I stepped outside today and ended up on one knee as the ankle on that side gave way. The other ankle has also been unreliable but I've never fallen. Of course, it could be arthritis plus old age.
Gussy
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I haven't had any joint issues. Sorry, Gussy. That would really bum me out!
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Well ladies one lesson learned. If you have long hair, thick, curly hair cut it as soon as it starts going. As I posted this weekend my hair was starting to go quick this past weekend after my 4th taxol. I choose to deal with it and hope to just ride it out. We'll that didn't work. I woke up this morning and the back of my hair was so matted and knotted together. I had to take the step, and cut it short. I hate it but have no choice. I am trying to stay positive and have up until today. Other then that I feel great, maybe a little more tired then usual.
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Volleyballmom2008, I cut mine as soon as it started and sort of regret it... it stayed thicker than I thought it would a lot longer. And I'm tired of my little khaki newsboy hat! I suppose no road leads to happy hair loss.
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Gussy
Yes! I finished AC then taxol 8 weeks ago. Random pain went thru all my joints the first few weeks after I finished..but pain in one hip and same thigh continue to really hurt. MO order MRI ..which I just did and haven’t heard results yet.
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Hello ladies, I had my 5th taxol of 12today. I also get carboplatin every third time. First few taxol not many side effects just tired. After treatment today I have developed stomach cramps and diarrhea. Did this happen to anyone else? If so what did you do. Premeds are Benadryl, decatron, aloxi and zofran. I have already had 4 DDAC. Thank
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hollywood19, I lived on daily Imodium while on Taxol...worked great for me
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hollywood1968, ask if you can take a probiotic -- I was told it was fine, and it fixed a bunch of issues for me. Apparently the Taxol is pretty hard on stomach flora and fauna. I can suggest the rice-based version of Bio-K, or they might have a prescription version. Also, I take lactaid with milk-based things, even though I'm not usually lactose intolerant.
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Thanks guys I will try the Imodium and message the doctor about probiotics
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so I wasn’t able to get my last DD taxol treatment due to the severe neuropathy in my feet... I hope the treatments I was able to complete are enough
I did complete the 4 DD AC and 3 DD taxol...
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ccmc I was only able to complete 8/12 paclitaxol tx due to increasing numbness in my right hand, pain in my feet and generalized muscle pain. Even though I didn't have the same cancer as you, I was told I had an extremely aggressive cancer and so they did neoadjuvant chemo. I just had my surgery 10 days ago and had a very good outcome: lymph nodes negative and no aggressive cancer left!
The chemo definitely did its job and I'm glad my MO took my quality of life into consideration as a priority. I no longer have the neuropathy, but still going through muscle pain with increased activity---definitely a big improvement and I'm so glad I didn't do more chemo. It seems like yours was treated early and aggressively, and its not worth risking permanent neuropathy and disability.Just a general update: My tumor was no longer palpable by the end of chemo and my MRI showed a complete response. Since I had a hormone positive cancer there were still patches of very slow growing non aggressive ( cells not likely to metastasize) left which were removed during surgery. The chemo works great on the aggressive cancers! I was a little disappointed there was not a complete response but I had been warned that would be very rare in a hormone positive tumor since they are usually not homogenous. They did remove it all and got clear margins. I had lumpectomy with reconstruction and breast lift and am super happy with the cosmetic results, though I will have to wait 6 months to 1 yr for the other breast to be matched and that is kind of a bummer. My PS refuses to try to match a breast before radiation. So I will be moving on to that and then probably tamoxifen. I am very grateful and trying to see the positive, but it does seem like this this treatment just goes on and on and on....
best wishes to everyone
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