Weekly Taxol for Stage 4
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I used these gel socks plus an extra set of gel packs. My infusion was a 60-minute drip to minimize SEs and I needed both sets of gel packs to last the entire time, or maybe my feet were just numb half way through and I no longer felt the cold haha. I also got one of those freezable lunch boxes for transporting them, then my nurse would put into their freezer as soon as I arrived and bring them to me when we started the Taxol (I had Perjeta, then Herceptin, then Taxol in that order so it was a couple hours before we got to the Taxol).
https://www.amazon.com/gp/product/B00IJZOKYU/ref=ppx_yo_dt_b_asin_title_o05__o00_s01?ie=UTF8&th=1
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Lynne,
I bought the NatraCure Cold Therapy Socks from Amazon for about $20. The socks have inserts to put a gel ice pack on top of the foot and another insert for the bottom. I've also seen other patients use ice packs or frozen peas that they tie to their feet so they don't fall off. For my hands, I hold a frozen water bottle. I start icing 15 minutes before the infusion starts and continuing icing 15 minutes after the infusion is over.
It's defnitely a challenge to ice during these already cold winter months, but definitely worth the trouble if it helps avoid neuropathy.
This is also my second go around with Taxol. I had weekly Taxol with my first diagnosis, and iced too then with no neuropathy. So if you have questions feelfree to ask!
Lori...we must be posting simultaneously! I have those socks too!
PB
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I need to edit my comment - I see that they only have the small with compression straps now. The smalls without straps were backordered when I needed them and I bought the large (no compression straps). The ones without straps let you put gel packs either on top of your feet or behind your heel in addition to the packs on the soles of your feet), the ones with straps don't have a pocket for the top of your feet. The large wasn't too big on my 7.5 feet. and I think it's better to have on top and bottom instead of heel and bottom for neuropathy prevention.
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PB haha I think we were posting simultaneously! Pretty sure it was someone here on BCO who recommended the NatraCure socks and that's why I went with that brand. Don't know what's going on with the Small size but the Small (without straps) has been impossible to find since last year, even when I checked at the manufacturer's website.
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Luckily, I have some NatraCure socks because someone had recommended them to me when I was starting on Xeloda. I will definitely take them with me tomorrow. I will try the frozen water bottle for my hands. Thank you very much for your help.
Lynne
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I know that this thread isn’t very active lately, possibly because few people have weekly taxol, but I decided to post an update anyway. It might be useful to others who start taxol treatment in the future. I am scheduled to have my third weekly infusion tomorrow. So far the SEs have been minimal. The first week I experienced achy legs and very red cheeks. The red cheeks only lasted for two days and were caused by the steroids. The achy legs lasted for 5 days, but Tylenol took the edge off. Week two was even easier. My cheeks were a lighter red and returned to normal after one day. My legs were much last achy, and they were fine after two days. Yesterday, 5 days after my second infusion, my hair began to fall out. I do not yet have any bald spots, but that is coming soon. I am prepared with a wig and scarves. I have suffered no nausea or vomiting, no headaches, but I have noticed a bit of fatigue this week. That could be due to low blood counts. My white count and neutrophils count both dropped during the first week. I am hoping that drop didn’t continue this week -at least not enough to delay tomorrow’s infusion.
I have to admit that I was a bit nervous about starting my first IV chemo, but people on these boards made things much easier by offering me support and encouragement. All-in-all things have been much better than I had I imagined they would be. I can do this.Thank you all for your help.
For those of you who are reading this because you are about to begin Taxol , ask questions here. People will respond and give you good advice as well as tell you about their experiences. Knowledge is so important when you are hesitant or scared or nervous.
Hugs and prayers from, Lynne
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Lynne, nice to see you here too~~I see you often on Micmel's thread. I had my 8th paclitaxel on Thursday. I have been following this site since I started December 6, 2018 I do not post often. I see above there's a lot of discussion about icing and I am not doing that. I have enough pain as it is. Back with my first go at breast cancer in 2012/13 I was also on paclitaxel but the dosage was 187 mg and every 2 weeks for 4 sessions. However I see that you would've been De Novo is that correct?
I tried Xeloda or Capecitabine as they call in Canada for 4 cycles but I did not tolerate it well with hand/foot syndrome and decided I would rather lose my hair than not be able to walk very well. So I have it weekly as you do. I was away on holiday so missed two weeks and my MO and I decided to come back and go right for three weeks. Unfortunately I got a cold as I was returning and also the day after (Friday) I had a nerve block which added another 10 mg of dexemethasone along with lidocaine. I get 10 mg of dex with my chemo~~ is that the same as you? As for the paclitaxel, the dosage is 127 mg.
I feel that I am tolerating it well so far other than those red cheeks that you mention. However this weekend I have been really sick with the cold and cough though thankfully no fever. I lost my hair too but my hairdresser shaved a mohawk and out of purple and pink which I had for almost 2 weeks before my son's partner shaved it all off for me. Because I lost my hair last I have not been so upset about it. Sadly I have only the use of my left hand so find it very hard to use scars which were my favourite. I still have my wig I have not dealt with that yet. So far my blood work has been good and I have a few aches and pains.
My daughter and her partner are coming over for Academy Awards and dinner my husband is making. We watched "a star is born" last night and we saw Roma earlier and just started the Black Panther on Netflix so it is unlikely we will finish. So we have not seen many but still it might be fun to watch.
Hope you are all having a decent weekend.
Marian
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thanks for updating.
I’ve been on weekly taxol since 10/2018 with Herceptin and perjeta every 3 weeks. My MO has yoblower my dosebif taxol once as my RBC, HcT, and Hrmoglobin all dropped to transfusion levels. I stabilized without one but in retrospect would get a transfusion next time.
I have you dcwerklyvtaxol timetable abdvgavevthe most problensceith my digestive tract going from constipated to having diarrhea. I had sone huge fatigue butcreslize now that was due to my anemia. I was also workibg full time and I think that pushed me s but far.,
My hair is actually growing back in the lower rise and I have that bunny for feel.
This treatment has stabilized my cancer from my head down. I have a brain MRI later this week and hope it helps with the brain mets as well.
Best wishes
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I had my hair buzzed last week since it was shedding so much. My scalps has a couple little irritations from the hair falling out and trying to wear a ball cap.
It’s a buzz and REALLY itches especially wearing wigs and hats.
Any tips?!
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Marian, I hope you enjoyed the Oscars. I have to admit that I fell asleep. I love the fact that you had that colorful Mohawk. Did you take any pictures? My hair is now very thin, and I think I will be bald after another shower or two. I am not as upset about it as I had expected. As SEs go, it is probably the easiest for me to tolerate. Yes, I was stage IV de novo, so this is my first time experiencing IV chemo. I had a very easy time on Xeloda. I felt really good while I was taking it, and I was surprised that the scans after three months showed progression in my liver. I think I am getting 20 mg of decadron, but I will check next time. It does not give me any burst of energy or prevent me from sleeping the night after treatment. I leave the infusion room really tired, probably from the benedryl, and I go home and nap. Haha. Have you tried any of the pre-tied scarves? You might be able to get those one with one hand. I bought one, and it is quick and easy to maneuver. The ends are short. The scarves have thin elastic in the back so they fit right.
Leee, Is your scalp still bothering you? Headcovers.com sells some items that might act as a buffer. Some of them are made from bamboo cloth and are supposed to be soft on the scalp. They are basically thin head coverings, like beanies, that can be used under hats, wigs, and scarves. A friend of mine told me that she found silk scarves to be most comfortable because they are soft and smooth, so that might be another way to go.
Leftfootforward, I am not surprised you experienced fatigue. You are one busy person! I don't know how you could do all that. Have your blood counts remained stable since your dose was reduced? My red cell count has actually improved since I started taxol. I am still anemic, but not as bad.
I had my third infusion on Monday. I had no problems and so far no SEs other than pink cheeks and of course the hair loss. No aches or pains this time. My MO told me that my white count is trending down, and if it continues this week, I will probably not be able to have treatment next week. He said that is not uncommon, so I won't worry, but I have to admit that I would rather not skip a week. I want this to work.
It feels good to find others on this same treatment regimen. Thanks for your help.
Hugs and prayers from, Lynne
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Hi ladies,
I’m here too! On dose dense taxol not weekly with gemzar, and have been on this about 6 months now, started last September. I haven’t come to post much, as so far I have been fortunate to tolerate it well. I have been icing since the beginning and I think it’s helped keep the neuropathy away, though last round I experienced 2-3 days of tingling in my feet for the first time, but it has since gone away. At yesterday’s infusion I started icing a little longer pre/post infusion and changed my ice packs more frequently during infusion. I am determined that neuropathy is not gonna stop mefrom from continuing taxol.
Lynne...I take 10mg decadron as an IV push pre infusion. I’ve had no allergic reaction to the taxol, so take Claritin instead of Benedryl, so I can drive myself to infusions, and also take Prilosec as a premed.
PB
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Lynne, this is the mohawk which I loved. Also you can see the steroid flush post chemo which kinds of matches.
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Hi 50sgirl!
I’ll check out the beanies and scarves!
My scalp feels better but the wigs are still itchy. I haven’t lost all the buzzed hair so that’s probably part of it.
I did use some Scalpicin (liquid hydrocortisone) that really helped and switched to Aveeno Baby Shampoo.
Thanks for asking!
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Hi ladies, I check in here periodically
I know that doing weekly Taxol is a long grind so I thought I would jump in to give you a boost. I finished 6 full cycles in early October and have had two CT scans. The last scan this week reported that I have no evidence of metastatic disease in my abdomen(where I had a tumour mass), pelvis or thorax. The two lung nodules now present as pleural thickening and are considered stable. So hang in there, you can do it! Kick the cancer out of your system and lock the door.
When my hair started to fall out, I got it cut short at first and then buzzed a couple of weeks later. Rather than wear a wig or scarf, I bought several Weekender Hats made by a company in Portland called Flipside hats. These hats are soft, fit fairly snugly, washable and are super comfortable. I could pull it off easily if I was too hot and stuff it into a pocket. The hats are a bitpricy but for the wear and comfort, they have been perfect. I found that on Taxol, my hair started to grow back around week 12 (End of cycle 3) so it wasn't the same as other chemo where it's gone for the whole time.
Marian, you look fabulous. Love the colour.
Be well,
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Hello Pots-
Thank you for the timely andencouraging post!! 💗
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Thanks for all the responses about the port! I ran it by the doc and will get one soon!
I’m SO ready (nervous too) because the pain/burning are not only at the IV site but also my entire arm all during infusion.
It seems as all I’ve read and my medical team that it shouldn’t hurt DURING infusion. They have been only concerned if it obviously pools with fluid around the site.
Is there any pain/burning with a port DURING infusion?
Thanks!
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Leee, I was given a “vein exam” before my first Taxol infusion. I was told that my veins are too tiny to have an infusion without a port, so I can’t compare one to the other. I will tell you that I have not experienced any burning or pain with the port. I would be concerned since it is not normal. At first I wasn’t really happy to get a port, but now I am glad that I did.
Marian, I love that Mohawk you had. You looked great. I am now bald and wearing scarves or my wig. One of my sons told me that I remind him of my mother when I am wearing the wig? WHAT??? No woman would ever say that, right? Hahaha. Admittedly, I have always looked like my mother, and the wig color and style probably make that even more obvious.
Pots, Thank you for telling us about your experience. It is encouraging to read that you are doing so well. As you know, each new step and treatment with this disease awakens new fears and doubts. Hearing from you helps.
Pboi, I have been icing, too, and I hope it keeps the neuropathy at bay. I have to admit that the ice is sometimes hard to bear, but I try to plow through.
Leftfootfotward, I was surprised to hear that you and Potshave seen some hair regrowth while still on taxol. Hmm,I am interested to see if I have the same experience.
I had my fourth infusion last Monday. I continue to have no SEs other than the obvious hair loss. I have to admit that I was surprised that my white count had stabilized enough to allow it. My red count was down for the first time since staring taxol. It will be interesting to see what happens on Monday. There seems to be no rhyme nor reason for results. I have had that miserable cold that is going around, but I think it is finally staring to get better.
I hope you are all having a good weekend.
Hugs and prayers from, Lynne
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I had my sixth infusion of taxol on Monday, and I am still feeling good. I am pleasantly surprised that I have not yet suffered any significant SEs. My onc told me that I am doing "great". It is amazing how far a few words of encouragement can go. He warned me to report any signs of neuropathy immediately since it can be permanent and can affect function. (He told me that I tend to minimize things and that neuropathy should not be minimized.) I did have tumor markers tested this week for the first time since I started taxol treatment. The CA 27.29 dropped from 2932.1 to 1799.4 after 5 weeks of taxol. I know it is still far from normal, but it is finally headed in the right direction. I would like to stay on taxol for as long as possible, so I hope it is working.
I hope you are all feeling good and doing well.
Hugs and prayers from, Lynne
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Hi Lynne,
So happy to hear you're tolerating Taxol well. I've been on Taxol/Gemzar about 7.5 months now, and feel pretty great. My first 6 months on this chemo, I had about 50% decrease in the tumor volume in my largest lesion, but the lesion is still measuring 9cm in size now. When this all began for me last fall, my liver enzymes were trending up, and thankfully all liver enzymes and labs are all back to normal now. There has been very minimal decrease in tumor volume this last scan in mid-Feb but everything was staying stable. My MO doesn't think I will have any more shrinkage, which I'm bummed about. I hope she's wrong, and trying to accept that just staying stable is a good place to be too. My mind can't help but wonder, how long this chemo will keep me at stable, as PFS of Taxol is somewhere in the range of 6-9 months. But I've seen others here who have been on Taxol longer than that, so praying that this will be the case for me. In the meantime, just trying to stay positive, and very grateful that chemo has been working and I'm feeling good : )
PB
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I am totally confused. Thought I was going to able to stay on Paclitasxel low dose 3 weeks on one week off until progression but today learned 6 cycles is the limit. I start cycle 5 tomorrow though I have to redo blood work done today so there must be a problem. Chemo is set for 1100 so should hear a couple hours after my blood draw if I go early.
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Marionelizabeth- ask tomorrow. I know of people who have extended it, i birve one might be on the boards. I am in weekly taxol and thee has been no discussion of endpoint. Maybe is different because the incevevery 3 week dose is higher?
I hope everything is ok with your bloodwork andyou csn get treatnent tomorrow.
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I just completed my 15 th cycle of taxol (#44) and begin my 16 th cycle on Monday. My oncologist told me that I can stay on it until the SEs (neuropathy) gets too bad for me to handle. I am almost there but it’s hard to give up a chemo drug that is working. All chemo drugs have SEs so you pick your “poison” ( please forgive the use of the word poison.) I seem to respond well to chemo. I took Xeloda for 18 months and found that very tolerable. I wish I was still on it. I’ve had so much taxol that I am weaker and more tired than I was a year ago but it’s all worth it. All the best to you.
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Sharegal, Welcome to the thread. It is always good to hear from people who have been on Taxol and are doing well. I know how you feel. I want to stay on Taxol as long as possible, too. I am not sure how many options are left for me. I liked being on xeloda, too. Although I felt really good when I was taking it, my liver mets continued to progress, so I had to move on. Is your neuropathy severe? I know that my MO does not want me to continue on Taxol once neuropathy sets in.
Hugs and prayers from, Lynne
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WOW Shoregal! Your information is so interesting and especially right now for me. I started my fifth cycle of paclitaxel on Thursday. I guess before I go any further I should ask you if paclitaxel is what you are on. Perhaps you are on some other kind of taxol? I was on Xeloda or Capecitabine as they call it here in Canada for 4 cycles but the hand foot syndrome got bad pretty quickly and with my red peeling feet I could hardly walk and that is not for me. My MO said we could keep it in our back pocket for the future and thus I started on low dose paclitaxel which I am tolerating now. I had low neutrophils for the first time this past week (1.34) but by the next day it was 1.99 so I had my chemo on Thursday and that is 127 mg I think. I certainly was weaker this past couple of weeks and oddly it was my time off in between my three weeks in row. Anyway please let me know what your routine is.
50sgirl, tell me again your taxol story.
Hope you are all having a good weekend.
Marian
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Thanks to 50sgirl (Lynne) and Marianelizabeth for your posts. I am new to posting so hopefully what I share is as helpful as what you have posted. I started on Paclitaxel 80mg/mz IV ( 3 weeks on and one week off) last February, it was reduced to 70 mg last summer. That seemed to be my “sweet” spot for a long time as the lesions were shrinking and I felt pretty good. This fall the neuropathy really took hold and I’m currently getting 60 mg same schedule. My last cat scan (end of February) indicated that the cancer was stable. I am grateful for that. It is unclear how much longer I will be in this drug (until it stops working?). I had #45 on Monday which is why it took so long to respond. The chemo hangover us finally lifting. I talked to my onc about what’s next. I like to be as proactively as possible and do my research. It’s a a partnership not a dictatorship. I feel empowered when i ask questions and are involved in the decisions about my life.
I did very well on Capacidibine (Xeloda) and managed to avoid hand foot syndrome. I read somewhere on this feed about this issue. I slathered my hands and feet in the am and pm with a mixture of Eucerin and Aquafor. It also worked for several of my friends facing the same SE. it’s worth a try if anyone has to go back on this drug or any other chemo that causes this problem. I was on Xeloda for 18 months which was a very good run. I do it again. In a minute!
Oh...my neuropathy is pretty bad but I don’t have pain. My feet are numb but I have no issues walking. I’m just careful. My fingers have numbness but with planning I can still fasten earrings, necklaces and buttons. I just have to be patient. I’m finally retired so where am I going in such a hurry that I didn’t take more time to accomplish what needs to be done. Every chemo has SEs. I guess it’s up to each individual to decide what they are willing or able ( I don’t have pain which clearly is a big deal) to tolerate.
I’m so glad that I finally decided to post. I look forward to learning from all of you and sharing my journey.
Diane (Shoregal
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Hi all,
This is my first post on taxol MBC because I just found this thread. I had my 6th infusion today so, lol I'm up a bit late.
Lynn, sweet lynn, in Feb. you asked if I'd like to be your chemo buddy. I'm sorry that I was such a massive failure at it. I have OCD fairly bad.....and reading all the different issues that "could' but probably won't happen was just too emotionally crippling for me.
However, tonight, I feel strong and saw two issues that you posted about which I wanted to offer suggestions.
Neuropathy…...my ONC told me to take Vit. B12 500-1000 mg a day to help prevent it. I've been taking it and have just slight tingling in one foot but walking is not an issue. And it's not constant.
The second thing. Your mention of achy legs. My first three infusions, I was given Benadryl in pill form. Then on the 4th infusion, they gave it to me IV form. Oh, my gosh. My legs started aching during the infusion and for days after. So, I asked my ONC what could have caused it. She said did they give you Benadryl in IV? When I said yes....she said that's what caused it. She put me back to pill form and I've never had achy legs again. Could this be your problem?
It's nice to read your posts and I'm real glad you're doing so well with taxol. I am too, Praise God. You're still in my prayers Lynn, and here's a hugh cyber HUG.
Sue
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Hi 50sgirl I had my first taxol yesterday and wanted to ask you if your still talking the steroid and Benadryl as premed before they begin the taxol? I did not have any allergic reaction to the taxol but wondered if I have to continue with the steroid next week. I was super jacked up and have been up all night 😜. I’ll email MO today but wanted your advice first. What other purpose does the steroid serve other than allergic reaction? Thanks.
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Rt_Chicago, Yes, I am still getting the steroids and Benadryl before the taxol infusions. I am going to change from Benadryl to Claritin to avoid the drowsiness I experience. I seem to remember being told that the steroid dose would eventually be lowered, but I will ask next week. I have read that an allergic reaction is most likely to occur during the first two treatments, so I think you will probably need the full dose at least one more time. I am a real oddity and have not experienced the sleeplessness or energy overdrive that most people have. I hope this treatment causes few or no severe SEs for you.
Sue, I have seen your posts on other threads, so I knew you were doing okay. Thank you for the suggestions you gave me. I will try the vitamin B12. My legs are no longer achy. I continue to be surprised that I have so few SEs. The only thing I really have is anemia, which does sap my energy, but I am hoping that once I change from weekly to three weeks on/one week off, my red blood cell service I'll begin to bounce back.
Diane, I am hoping to stay on taxol as long as possible. Is your onc concerned about your neuropathy? Obviously, the dose reductions were intended to help lessen the symptom, but does your onc seem concerned about any long-term impacts? I feel my options become more limited with each treatment change. I was given my choice of taxol or a clinical trial this time. I obviously chose taxol. My main reason was that I feel it is a proven treatment, and that gave me a little piece of mind. I do plan to discuss clinical trials with my onc once taxol fails. I have noticed that eligibility varies for each trial, and some don't accept more than one previous type of IV chemo, so I don't want to jeopardize my eligibility by jumping right into another IV chemo. On the other hand, I am reluctant to go into a phase I trial. Do you think I am a bit too picky? Lol.
MarionElizabeth, I had my 7th weekly taxol infusion last Monday. I am feeling good with no real SEs so far. Oh, I do have hair loss, but I can deal with that. As I noted above, I do suffer from anemia, but not severe enough to need a transfusion. My hemoglobin hovers around 8. Next week should be my last weekly dose of taxol, then I will switch to three weeks on/one week off. It will be nice to have a week without any visits to the cancer center. My onc's plan is to keep on taxol as long as it works without serious SEs. Of course, I have not yet had a scan, so I don't know if it is working. Back to the hair loss - I think my wig looks better than my real hair. I have to admit that I find it easy to just plop that wig on my head instead of having to pull out the hair dryer or trying to style my hair into something that looks decent. Do I like being bald? Of course not, but I am making the best of the situation. When I put on the wig, I wear a bit of makeup and pretty earrings and feel good. I suspect the wig will be hot in the summer, so I will have to figure out something. My hair fell out too quickly to try a colorful mohalk, btw.
I hope you all enjoy your weekend.
Hugs and prayers from, Lynne
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Hi everyone!
I've been on Taxol/Gemzar 7 months now. I have tried to eliminate as much of the pre-meds as possible. I have heard that some on weekly Taxol have been able to get rid of taking a steroid pre-med after a period of time on Taxol, and they seemed to have done ok without it. No luck for me though, I'm on a dose-dense Taxol and the pharmacists say I need to have it. I was able to negotiate a switch from Benedryl to Claritin so I could drive home from chemo, and I don't nap that afternoon because of the Benedryl, so thankfully I'm able to sleep ok that night.
PB
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I am very confused about this - is TAXOL identical to Paclitaxel?
I have been told I have no other treatment choice except to do PACLITAXEL weekly and this is my first time for chemo......I am only doing it as it is the only treatment option they have given to me and I know that the cancer is running rampant in my back and ribs........I had two new vertebra fractures show up between CT scans just two weeks apart and can feel ribs clicking when I move.....I am on high Fentanyl patches and top up medication with all their side effects.
MY CONFUSION
Oncologist told me WEEKLY Paclitaxel would not affect my kidney at all,
that I would NOT lost my hair (yet you all have), - I dont want to suddenly lose my hair and not be prepared......and I am a very private person so don´t want people to know I have cancer and losing my hair will announce it loud and clear....any ideas please?
that she cannot reduce the dose as it will not work.
That I will notice an effect from the chemo in terms of cancer within the first two cycles
I get terrible palpitations from all anti histamine medication and steroids really do not agree with me....do they HAVE to give these before the chemo itself?
Onc makes it sound like its an aspirin and says it "won´t kill me"---------well that worries me less than kidney damage and having to be on dialysis afterwards.........so please can anyone reassure me? I am so worried I actually told my family and main doctor I wanted to do the palliative route and just not do treatment, my husband died 5 months ago and I have been struggling a lot and now the last two months with all this......I have no inner resources left........family have all said I am not in a fit state to make decisions and to take anti depressants and do the chemo, but then its not them who will suffer the negative effects is it..........I have been one month away from dialysis TWICE in the last 15 years due to a condition affecting my kidney, but kidney function is ok at present, however it makes my body very sensitive to a lot of drugs......so this is a realistic fear not a neurotic one.....
What supplements should I take? I have been told to take Turkey Tail Mushrooms.....I take B12 anyway..........anything else? What would you take Glutamine for?
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