Weekly Taxol group
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Claire1973 -
My taste buds never went away, but it was obvious that salty/sweet were out of whack for me by at least week 2, and they stayed that way. I was not confident enough in my palate to cook for my husband, let alone for others. I remember thinking it must be hard for chefs and cooks to endure this. I never fully lost my palate, and I got used to it over time, but that doesn't help when preparing food for others.
My notes say that salt was really amplified for a few days around 7-9 days PFC. It was kind of fascinating to go through it, if that's any consolation. It lasted about 1-2 days and then suddenly things tasted normal again. Sweets were amplified during chemo and they taste normal again as well.
I'm sorry you're going through this.
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Hi LW422
I wish I had done that. I only have one treatment left! #12 tomorrow. My mouth is so sensitive right now I can't even eat ice cream until it melts. I'm also wearing the cold cap, so everything is already so cold!
Anyway--wish I had done that from the beginning. I will do that tomorrow if I can tolerate it. Thanks for the tip.
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Claire--if you can, at least have a drink with ice in it. And I hear you on the icing... I'm sitting in the chair with my icing socks on, holding an ice bag for my hands, and sucking on ice. Thank goodness for those warm blankets!! I didn't go with cold-capping so this week I'm finally shaving my head.
I hope your messed up taste buds is just a temporary annoyance. 0 -
Hi LW422. I stumbled upon your post while searching something else but wanted to respond as I similarly had the same pinched nerve experience a few years ago as well. I'm not on Taxol weekly but am getting it in my 3 week TCH regime. I've had similar nerve feelings in my shoulder as I did with the pinched nerve. It usually doesn't last long and isn't too frequent so I haven't worried about it. I finished my last round of chemo today and hoping for no more nerve problems. Good luck to you and hope it goes away soon.
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Thanks, MsMurphy. It's really an annoying pain but not unbearable. I found a few references online so I think it definitely happens to some of us. I appreciate your response. Take care.
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I will be starting weekly Taxol treatments next week. Anyone else doing weekly Taxol at the same time? I thought it might help to talk about it and compare preparations/side effects/etc
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Hello Aram,
I started weekly taxol infusions late last September and in January switched to a three week on one week off schedule. In general taxol has been very easy to tolerate as far as side effects except for one biggie and that is neuropathy.
I didn't start soon enough and let a few months go by before I started icing my hands and feet during the infusion, but many people have had really good results. I bought some booties and gloves with gel inserts to freeze off of Amazon but your nurses can also fix up some ice packs for you if you want to start out like that. Some people also recommend taking B12.
I'm wishing you good luck and great results with Taxol!
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I think iIt's B6 for neuropathy prevention/treatment
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Hi Aram. I had weekly taxol treatmnet # 7 yesterday. I have 5 more. How are your side effects?
I had stabbing pains in a toe and in the ball of another foot for a couple days after last treatment. I wasn't serious about icing -- I started late, ended early -- so this last time I began icing before treatment and kept icing for 10 minutes after. So far no added neuropathy symptoms and no stabbing pain, but it's only the day after the treatment. If this time is llike last time, I'll feel it tomorrow. My oncologist doesn't recommend icing but doesn't discourage it. I know that if I didn't do it and got neuropathy, I'd regret it.
The best thing I've done to counteract effects of Taxol (as far as I know) is to hydrate and add more fluid through the IV drip. So I get a liter of fluid during treatment, and I get a liter the following day via IV. The weeks when I didn't do this, I got dehydrated and needed to go in for fluid even though I drink 92 oz of liquid a day. The nurse mentioned today that my IV fluids the day after treatment also help to wash out the toxins -- so I'm really glad I'm doing the extra fluids as a matter of course. I do make sure I drink 92+ oz a day.
My skin is weird. I made the mistake of taking a bath and my skin on my feet absorbed a lot of water and peeled. Elsewhere my skin peeled too. I will only take short showers now.
I hope this helps, Aram. I hope you're doing okay.
Jennie
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Kattysmith, thank you. I got some booties and ice packs from Amazon and used it for the first time. The nurse was suspicious whether they are going to be useful or not but I did it anyways.
Jennie, yay! you are more than half way done! I had my first treatment on Thursday. The infusion went very smoothly. I did ice my hands and feet but I didn't chew on ice. I couldn't sleep the first night because of steroids but other than that so far I haven't had any side effects. I was in bed for a week after each AC treatment so this one so far has been much better. I am also drinking between 2 to 3 litres starting the day before the treatment. I am waiting to see if nausea might kick in after steroids wear off but both the doctor and the nurse said I shouldn't get much nausea with this one. I hope they are right.
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Aram, good luck with the icing! I'm treated at MD Anderson in Houston and even though my oncologist said he didn't think icing did any good, the nurses have been all for it! In fact MDA has been doing a study on icing and I heard that so far the results support it Hey, at the very least it won't do any harm, right?
Have a good week!
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Aram, sounds like it's going well for you. Had my first Taxol before the weekend and now dealing with body aches. I think I had my steroid crash yesterday when I felt moody. I iced during the infusion and found the mitts I bought were good but got warm after 20 min so glad I brought a second pair. The booties were not so great, however; nurse said the neuropathy threat is on the tips of toes & fingers so the booties were not contacting those areas. I ended up using frozen water bottles I was told to bring which not only stayed frozen longer than the mittens/booties but adequately provided contact for toes & finger tips.
UPDATE: For anyone learning about icing, at my 3rd Taxol tx, a different nurse said the ice should contact the whole foot, not just the tips. I found removing the ice pads from the booties and just stepping on them gave me more contact in preferred places.
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I had my second one yesterday. I couldn't sleep last night! I was awake till 5 in the morning. I am not sure what is different about dexamethasone in IV! I used to have pills when on AC and no issues sleeping. Did/Does anyone have insomnia? Anything that might help?
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Hi Aram!!
Gabapentin helps me sleep -- I take one an hour before bed for nerve settling. I was given it for post surgery nerve damaage and they've encouraged me to continue it for neuropathy. When I know I won't sleep because of steroids and gabapentin won't be enough, I take an Antivan. I was given Ativan for anticipatory nausea for AC, but advised to use it if I need to sleep. Ativan works really well.
I just got my 8th Taxol today. I talked to the Nurse about neuropathy symptoms. After Taxol #6, I got some stabbing pains in two toes for a couple days, then it went away. After #7, I got pins and needles in a few places in my foot and finger. After a couple days, it went away. The nurse told me that the fact it goes away is really good. If I follow the pattern, I should have no neuropathy problems after treatment. She says it usually comes on quickly (if a person gets a real case of it), doesn't go away, and progresses quickly. I oddly enough didn't ice today. I think the Benadryl before the Taxol made me not care whether I iced or not, which is really pretty funny. The Benadryl also makes the wood grain of the floor turn into a river - hahaha! Anyway, it was good to hear the big picture about neuropathy and what my experience might mean if I follow the pattern.
The pins and needles and stabs are pretty much the only side effects -- plus fatigue, of course. I feel better after talking to the nurse today. I got an extra bag of fluids and I go in tomorrow for an extra liter, and I drive 12+ cups a day. I think the extra IV fluids really make a difference - I am prone to dehydration but I haven't gotten dehydrated since I started the extra fluids.
That's it -- I hope my experience helps you. Taxol, for me, is so much easier than AC, although it has its own set of problems. It's very different from AC.
Talk to you soon!
Jennie
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Hi Jennie,
Thanks. I will ask my doctor for a prescription then. I do not want to go through one of those sleepness nights again! They make me feel like a zombie the day after.
That is great news about neuropathy! Hopefully it stays that way and you only have 4 treatments left! Like you, Taxol has been much easier on me than AC. I am working full time now, even the day after infusion. With AC I was completely out for about 7-8 days.
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Aram, I was prescribed steroid pills to be taken hours before my tx. I can attest that after taking them I had a hard time staying asleep and kept waking up. They also raised my blood sugar on my bloodwork as the body processes steriods as a glucose. MO says if I don't have a reaction to the 2nd Taxol infusion (which I didn't) then I can stop the steroid premeds.
Jennie, thank you for sharing about the nerve effects. Glad they went away quickly. Whatever you did with the ice was apparently helpful. Also interesting are the drugs you are using Ativan and Gabapentin.
I had my 2nd Taxol round today and another patient in the waiting room commented on my ice cooler in tow. She said she and other patients she knows didn't ice due to inconvenience and now has debilitating neuropathy in fingers and toes. I felt so terrible for her but hope as she is counting on that it will heal eventually. Icing is hard; I myself had anxiety about how I was going to get the equipment to the clinic and use it. I really had to come up with a plan. As it is I hope what I did was effective so far and worry about mistakes and imperfections.
I agree Taxol is an easier drug than AC but does present with issues. AC was bi-weekly and required more corrective drugs such as Neulasta, which did their job. Taxol has the neuropathy threat with the required icing and the weekly doses (unless dose heavy with symptom risk) are less convenient. So for me, AC was more of a cakewalk.
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So scared. At my 2nd Taxol round my bloods showed anemia, RBC has been going down steadily since the AC, so now MO wants to give me a blood transfusion. At first I resisted but then team member spoke to me and I agreed to go through with it since it made sense that Iron supplementation may not correct since anemia is due to low RBC, not hemoglobin. But now I am having second thoughts. I am terrified of transfusions as they carry risks of future diseases. Has anyone here ever had a transfusion and/or what do you know about them, thanks.
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HopeHeal, I agree icing is not easy. It is kind of even painful during infusion or at least my mittens were too cold.
I am sorry about blood transfusion. I haven't had any experience with it but I am expecting my blood counts to drop as well. Unfortunately that is a known side effect of weekly Taxol, less neuropathy more blood issues. There is always something.
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I forgot to mention I noticed this morning my nose is bleeding. I guess a symptom of low platelet count. Any remedies?
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Hi Aram,
I finished my weekly Taxol on March 25th. Starting after #2, I got nosebleeds around 3 or 4 times a week. I think this is because the chemo is affecting your fast reproducing cells and that includes your nasal passage....and your mouth. About 2-3 weeks after my treatments ended my nose was completely back to normal. My mouth took about 4 weeks. I did not have mouth sores, but I could not taste anything in a normal way and the tip of my tongue was numb.
For the nose bleeds--I bought a 5 pack of navy blue handkerchiefs and had one in my pocket at all times...that kinda helped me with the stress of possibly getting a nosebleed out in the world and it looking like bloodbath on my face (lol)...they came in handy!
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thanks Claire for the tips.
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Sure! I can also chime in on Gabapentin. I am taking it and have taken it for 3 different things -- the wonder drug. I was first prescribed for neuropathy and sleep. I was given a 900mg per day allowance to be taken at night. They are 300mg pills. In the beginning, taking 2 pills caused me to have a headache in the morning so I scaled back to 1 (300 mg). after about 6 weeks I moved to 2 pills at night but I take them at around 6:30pm, and with that timing I don't wake up with a headache.
After the neuropathy and sleep were not a problem, I stayed on post-mastectomy because it helps with the zinging nerve stuff.
That is correcting itself, but NOW I am staying on it because it helps with the hot flashes at night that are caused by the Tamoxifen.
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HopeHeal, I get where you are coming from. I ask lots of questions when a doctor recommends anything for me. I have not had a blood transfusion, but if my onc ever says I really need one, I will accept it. Look at it this way: Your current anemia represents a clear and present danger, versus a low chance of a problem far off in the future. You need to have a future, so do what will help you right now. I believe blood screening is much better than it used to be, and maybe your doc can tell you more about that if it will help your fear.
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Hi Aram, I agree the icing can be painful, as I experienced yesterday. So I asked the nurse if that is supposed to be and she said icing should be tolerable, not painful as cold pain could also damage the nerves. Now I am waiting until my icing materials are defrosted more or putting a cloth in between so it's not pain-inducing. I did not know about blood issues were an effect of Taxol, thanks for the info. Yes, no chemo lets us off easy. That's why many of us have to take time off from work or school. But glad you are able to be back to work on Taxol!
Claire thanks for sharing. Nosebleeds, oh no! I'm already prone to nosebleeds in one of my nostrils when the air gets to dry, so hope that's not what have to look forward to. Good idea about the hankies, I should prepare.
Shetland, thanks for the understanding. From what I have seen here I think all patients are hesitant about transfusions. We tend to think of them as a solution to injuries, but we are being injured internally somewhat by the drugs. You reason well; Anemia is dangerous and can cause other problems. After my team spoke to me about it I accepted and agreed to the transfusion. Some of us have all these fears because of what we've heard or read online. Going back next week for additional blood testing and transfusion prep. In the meantime I am taking more iron.
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I have had a number of blood transfusions and several albumin infusions (another blood product). We ultimately have to have trust in the system. The screening mistakes made in the past are not being made now and the procedures are more stringent. I didn't hesitate for a second.
They are tedious because the infusion is run slow. But when my Hbg was very low & I felt awful, within a few days I felt like a new woman. It's a wonderful intervention when you need it.
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Thanks for the encouragement Moth. Another team member just informed me that athletes sometimes illegally use blood transfusions to up their energy. So I guess I can look forward to it, because right now I really just want to go back to bed. It's probably better to be slightly anemic though for cancer since tumors rely on good blood supply.
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I am back on the chair for 4th Taxol, and second Perjeta/Kanjinti. Taxol has been much easier on me. No major side effects except for fatigue. The nurse told me today my Neutrophiles have been the lowest this time only at 1.08. Still no shots though.
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Aram, I think the Taxol is just as hard on the blood counts as the AC. I don't know why Neulasta is not used for it.
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I don't know either and I am kind of concerned because my blood test is every 3 weeks. What is the cutoff for infusion? How do they know next week where my neutrophils are at (I had my blood test this week and next one is scheduled for 3 weeks from now)? I just sent an email to my MO with that question. Hopefully he doesn't get annoyed!
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Aram, when I was on weekly taxol I had to have blood tests each week of treatment.. That's the protocol here in BC - CBC & diff + platelets before each treatment. Any signs of liver probs they add bilirubin and ALT to the weekly blood test.
The cutoff in BC for neutrophils is 1.0 x10^9/L. If you fall below, treatment is cancelled and they dose reduce the next week's - or give you more Grastofil/Neulasta shots.
I needed both a dose reduction and Grastofil to keep my counts up. I think it's fair for you to ask what their protocol is. Here is BC's for reference http://www.bccancer.bc.ca/chemotherapy-protocols-site/Documents/Breast/BRAJACTW_Protocol.pdf
btw, my WBC counts have been better on Abraxane. Haven't needed Grastofil since I switched to Abraxane. So if someone is really struggling with neutropenia, a switch to Abraxane might be worth exploring.
edited to fix link to the BC protocol
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