Weekly Taxol group
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Hi CBK- wow sounds like you had the same side effect as me. It's funny I rested all weekend and did some gentle stretching now no more aches in the quads. I'm hoping it won't occur as bad again if I rest more! I tend to do more then I should. Thanks and best wishes to you
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Bill, I’m so sorry to read about your wife suffering. The reason I asked because I was worrying about my neuropathy when I was doing my chemo. My MO and I agreed to stop at #9 because both of us worried about permanent damage also. Now I’m 9 weeks post and 80% of neuropathy went away, Thanks God,
Praying for her neuropathy pains will go away soon.
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Sammi-my last Taxol is also Feb 2!! I’m excited for us both! This past round definitely hit me harder too. I’m hoping the last few won’t be too bad. I’ve been in such a tired, dizzy fog the whole time from this one!
Bill- sorry about your wife’s nerve issues. That procedure sounds interesting, and I really hope it helps her
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Paulette...... Thank you for your kind words and prayers. I'm so happy that your neuropathy is doing so much better. My wife started retaining a lot of fluids around the 8-9 treatment. By the last (12th) treatment she was carrying a little over 60 lbs of excess fluids They had by that time started her on Lasix and edema treatments, but apparently the damage had been done due to the extreme pressure on her nerves from the severe swelling. They did have her at one point see a vascular surgeon and at least found she had no vascular damage. The other problem was when the excess fluids started coming off (which didn't start until about 3 weeks after the last Taxol treatment) she lost something like 20 lbs in one week which sent the electrolytes in her blood way out of whack. The vascular Dr had warned of that possibility so we at least had a warning of what was going on. That was a very scary weekend with her blood all messed up. But again when we look around there always seems to be someone in the same boat as us, some worse. So although it kills me seeing her like this and what she's been through we enjoy and have fun on the good days, and kind of take it easy on the not so good days. The other side of this is when I was diagnosed with cancer back in 2004 (from Agent Orange during my tour in Vietnam) she was my crutch. So I guess we all find a way when our time comes to make do and get the most out of all we can. Besides I grew to like ironing back in my days in the Army, haha, so that part was easy to handle. Add all the rest that I'm sure you're aware of (cooking, cleaning, laundry, yard work etc) and it becomes a full time job for the one who's healthy at any given time. So going by my wife's experience I'd say you're pretty safe from any bad lingering long term effects at this point, which is great !! Again thank you for writing and please stay positive and get really well soon!!!
Bill
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CIW... Thank you for your encouragement. It seems there's all kinds of new treatments and meds out there, one of the reasons I try and keep up here. As many might know (I thought it was a joke) chemo brain is truly a real issue. My wife actually went to a 3 class group session on Chemo Brain and how to deal with it near the end of Taxol, which she had after AC. That too (CB) is unfortunately lingering, so again my reason to try and stay on top of things. My prayers and thoughts are with you as well hoping you have a completely positive result after all you've been through.
Bill
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CIW... Thank you for your encouragement. It seems there's all kinds of new treatments and meds out there, one of the reasons I try and keep up here. As many might know (I thought it was a joke) chemo brain is truly a real issue. My wife actually went to a 3 class group session on Chemo Brain and how to deal with it near the end of Taxol, which she had after AC. That too (CB) is unfortunately lingering, so again my reason to try and stay on top of things. My prayers and thoughts are with you as well hoping you have a completely positive and speedy recovery after all you've been through.
Bill
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I just want to say thanks to all the men, friends, and family who are there for all of us. My husband has been a rock even when I have been totally furious on him for no other reason than it was chemo day and I was taking out on him. I have so many people getting their treatments all alone so I know I'm very blessed.
Special thanks to everyone here on this thread. You have given me peace of mind many times. I hate cancer but love how it showed me the best of so many people.
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Thank you Bill. I am in a really good place. Most everything is in the rearview mirror, and I feel great.
I will continue to pray for your wife and hope the new procedure goes well.
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Hi, Marleigh! I finished my weekly taxol treatment two and a half months ago. I had the same reactions of burning throat and awful taste in my mouth towards the end of each taxol infusion, even after I was on slower drip rate and a reduced dosage. I felt so sick during infusion and sitting in the chair was torturous. But I was okay a few hours after infusion and for the rest of the week. Good luck with your remaining DD taxols.
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Gussy...I wonder if the Taxol side effects are greater with those of you who had prior A-C chemo. I would think you were already compromised before starting the Taxol. I was on an oral chemo pill Ibrance/Letrozole for almost 4 months before it failed. Then, on to Taxol. I'm 73 and have very little side effects. But, we will see what Taxol #7 does tomorrow.
Bill...Wishing the best for your wife. She is lucky to have a caring husband to look after her. Hope this board answers lots of questions for you and her.
Sammi...What is the amount of B6 that you take? I presume it's OTC? I take 1,000 mcg. of B-12, but I might start the B-6 in case I am "blessed" with neuropathy.
Well, Taxol #7 for me tomorrow, along with X-Geva....praying that my side effects remain minimal.
Wishing all a great day!
Hope
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nonahope- The vitamin b6 is OTC. I am taking 50mg daily. The NP at my docs office said that she recommends no more than 50mgs because you can worsen neuropathy if you take too much.
CIW- we are on the same track! Hopefully your fog clears soon! Mine just cleared yesterday, I hate how it seems to last longer with each infusion, but we are almost there!
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Thanks Sammi.....I'll check out the B-6. That doesn't seem like much to take. Interesting that it could possibly make things worse...something to think about, I guess.
Hope
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Hope even I finished chemo, I still take B6&12 .
I appreciate all the care takers I know how hard it is for them to take care everything and watch the person who got sick.
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Well, I'm unhappy to report that today my nails starting lifting, nearly half way down the nail bed. My dose was decreased 25% after I started getting neuropathy in my hands after #3. My nails had brown blood pooled under them following AC and I believe that this is how far they've grown since AC. I sent a note to my NP asking for advice, but I don't think that there's anything I can do at this point.
Sigh. I hate Taxol.
P.S. I iced my hands for the first 3 infusions, then quit when they reduced it 25%. I don't believe the new nail growth is damaged. What is lifting seems to be the older nail. I take a B supplement every now and then, but not religiously.
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Lisa...
My nails are so full of ridges and they snag on everything because they keep peeling. I started taking Biotin - not sure that will help anything other than my "mind"...LOL
Had Taxol #7 this morning, along with my X-Geva injection. All went well and I'm good for a couple of days until the achiness sets in for a couple of days. I keep looking for new side effects with each round. My onco did say that this would be a six month treatment and then I would go on a hormonal oral pill of some kind....at least, that's his plan at this time. It will depend on how I do on down the road. Scans will be done after treatment, so that will tell a lot. My labs have been much better so he's pleased about that. He feels that's a good indication that the Taxol is doing its job. Not that I will be "cured", but can continue to survive with a less potent med for awhile.
Hope
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Taxol #10 in the books yesterday! So far there have been no significant changes and since my neutrophils and liver have stabilized, I only have to go in for labs before taxol #11, no doctor appointment unless something comes up with my labs! What I have noticed though is my weight keeps creeping up each week. I have put on about 10lbs. I eat fairly healthy and have cut back on the amount of sugar that I eat. I haven't been working out as much though. Taxol and neupogen have wiped me out so exhaustion and maybe the steroids are the only thing I can think of that might be to blame. Has anyone else noticed this?
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sammi- yes!! I’ve definitely gained weight. On Taxol only. AC my weight stayed the same. I’ve gained like 15 pounds on Taxol. In general I’m a healthy eater but have eaten more sugar/bad food with how much the steroids make me hungry. My oncologist did say the steroids make you hold more water and some of that weight will disappear as soon as I am done. I also had number 10 yesterday. We are so close
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13 days till we are done CIW, I can't wait! On AC I lost 15 lbs and then gained it back during my two month hiatus from chemo and then this additional 10...In the beginning after my MO told me I was going to go bald I asked him "Well, will I at least lose some weight?" and he told me I would probably gain about 10lbs. I have decided that is something I will worry about starting 4days after my last taxol. I would start sooner, but my 30th birthday is three days after my last chemo and I really want wine and a piece of chocolate cake lol!
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sammi-we are so close!! How amazing is that? So excited to move forwards! I just graduated nursing school and start my first job feb 26th. So excited. Also, yes, wine and chocolate cake are absolutely necessary! We are similar in age too. I just turned 32 in December. Happy birthday to you! Being done with chemo is a pretty amazing birthday gift! Something I’m so looking forward to is getting my hair back! If we can get through chemo we can lose the weight we gained!
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sammi2006- I had been experiencing minor weight loss (2-3lbs per check-in) with my AC treatment, but I have stopped seeing that with my weekly Taxol - just got #5 yesterday. I have been trying really hard to cut WAY back on sugar based on recommendations from several books and cancer gurus that I follow, but apple pie is my go to for comfort and flavor - it is still so delicious to me. I'll hit a piece of dark chocolate every now and again, but I have realized that there is so much sugar in everything we eat that I've got to start address that as well.
I will echo other sentiments about not feeling like exercising (I do try to walk with my family on the weekends when it isn't raining and I overdid it in the garden last weekend because we had two consecutive days of sunny/mild weather), but the recumbent bike in my basement doesn't see much use these past few weeks. I'm not exhausted per se, but riding on the bike the other night at a low torque REALLY made my heart race and I had to take several pauses, something that I've never had to do before.
I've definitely got fuzzy hair growth (about an 1/8 of an inch) and it feels downy with a couple of spiky hairs mixed in. It is coming in dark, which is what my roots were before, so I am dying to see what it looks like as it gets longer. I keep fearing it will fall out because I love looking at it getting longer every day (or at least it feels like it does). It also makes me feel better since my eyebrows and eyelashes are almost completely gone. Now I think I have a sty in my bottom eyelid, but I can only feel it, not see it. I've been recommended to put hot compresses on it - anyone else have/had this with any recommendations? When I told my MO that I was having visions issues she said "Wow, that is a weird side effect" which makes me so glad for this forum because her lack of knowledge would have otherwise added more to my worry boat!
As for nail lifting, I am experiencing nail bed recession - about 1/4 of the way from the tip on each finger, is that how it always goes? I haven't got any dark patches under the beds and minor ridging happening on some. Does anyone recommend cutting them down to where the recession starts or just keeping them really short? I can see the danger in having less attached to the bed and then accidentally prying it off by hitting something the wrong way.
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@CIW -- for constipation, I eat dried prunes and put some prune juice in my morning shake. Prune juice alone will probably do the trick.
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Hi, Gussy and Taxol friends,
I was not able to get taxol on Wednesday, Jan 17, as my white cells and platelets were waaaaay tooooo low. This after a blood transfusion the week prior. So I got three shots of Neupogen which, for me, was harder than the Neulasta most of us got with AC. Headaches and bone aches. With all the flu and viruses out there, both my husband and I are staying home except for basic errands during off hours (we are retired).
When I got my second opinion on Friday, her only question was the value of added carboplatin which may be keeping me from staying on schedule with taxol. I should share the very GOOD NEWS that, unlike AC, taxol has my tumor shrinking! Yea!
So that's my update. I've been off the board but will check more often. Thanks to all for sharing your experiences.
And as others have said, thanks, hugs, love, and great appreciation to the husbands, caregivers, friends and dear ones who help us as we fight this cancer. I have learned so much about how to give and receive and eagerly await the day I can be of service to others.
Paula, Atlanta GA
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Sorry about the weight gains with Taxol. Fortunately, I haven't had that issue. I do make an effort to stay within 1,200-1,500 calories a day. After 7 rounds of Taxol, I've pretty much maintained my weight within a pound or two.
Sammi & CIW....We will all be celebrating your final Taxol infusions soon!!
MissMelissa...We all have those "go to" foods...mine is ice cream! I eat it every evening. A nice slice of Apple Pie would go well with my scoop of ice cream, though.
Had Taxol #7 last Thursday....still feel fine. A bit achy yesterday...but, gone today.
Hope
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No weight gain for me with Taxol. I'm only given steroids the day of the injection and I'm pretty sure (from my energy level dropping) that it's out of my system the next afternoon.
Taxol #9 is Wednesday.
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hi people 😊
I know bone pain is common with Taxol. Just wondering if any of you get pain in your hips/low back from it? I did a few weeks ago and now again this week. It’s soooo painful. I can’t lay on my sides at night.Feels more like nerve pain than anything. Anyway, obviously any/all symptoms scare me these days, but this sounds like just Taxol right? I’ll definitely take Claritin before my next dose on Friday.
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CIW - Yes, I used to get pain in my hips and lower back and also my arms while on taxol. It normally started on the 3rd day after transfusion but was gone by the next day. I think the Claritin definitely helped reduce the pain
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CIW, Taxol depletes the body of red and white blood cells. I believe that the The body harvestsnew cells from bone marrow, and that's why we experience bone pain . So, yes, normal.
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missmelissa-my nails ache and have deep indentations in them and a few are discolored. I have cut them all short and that seems to help because they don't get caught on anything.
PaulaAtlanta- I am sorry about having to get neupogen. I have been getting two neupogen shots after each taxol since taxol #4. Taking claritin daily has helped to prevent bone pain from neupogen.
CIW-hopefully the claritin helps. I have been taking it pretty much daily since I started neupogen and haven't really had any bone pain
Lisa-that is great! Good luck with #9!
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CIW I didn’t have that kind of pain I only got pain on my knees. Some got that on their chest you would know what taxol does. Ask your MO maybe he/she might know. Send you some good vibes.
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CIW - I finished chemo 12/21 and still have muscle/bone pain from Taxol. It is normal and unfortunately can linger after treatment. Claritin didn’t work for me - hope it does for you.
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