Weekly Taxol for Stage 4
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What is the difference between a session of chemo and a cycle of chemo please? Sorry if my questions are really basic but this is a massive thing for me and I know nothing about it at all as I refused chemo 7 years ago, which I do not regret at all.....but now with the pain and Back stabilising brace I have to wear I know I have no choice......and lobular came back with no hormone receptors except 6% ER pos.......not enough to tackle the aggresive activity going on....
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Lily, I am sorry that you find yourself in this position. Being told that you have stage IV breast cancer to overwhelming, confusing, and frightening. We have all experienced those emotions. In addition to what most of us are going through, you have recently suffered the devastating loss of your husband. Of course you feel a great deal of anxiety.
I will try to give you some information,and I am sure others will add more information.
Taxol is Paclitaxel. I was reluctant to start the treatment, too. It is the first IV chemo I have had, and I expected to experience a multitude of terrible side effects. I have actually felt very good during these first seven weeks of treatment. From the descriptions posted here by others, it seems that. That most people have had a similar experience.
Hair loss is very common with Taxol, but I do know of a few people who did not lose their hair. I was a bit surprised to hear that your onc said you would not lose your hair. Perhaps your dosage will be so low or the duration of your taxol treatment will be so brief that you will no suffer loss of hair, but I do not feel comfortable telling you not to prepare for hair loss. In my opinion, it would be better to get a wig and/ or head coverings, just in case. There are many wig styles and colors available, so you should be able to get something very close to your normal look, and most people will not realize you are wearing a wig. It took me 2 hours to make a decision because I wanted to be sure I would truly be happy with my choice. Many people don't like their wigs, and you might need time to adjust, but I actually like mine. I like the way it looks on me. I like the ease of care. I would recommend that you shop for a wig before you lose your hair.
I have not heard from anyone who has suffered kidney damage from taxol. That doesn't mean that it never happens,of course. I am just not aware of it. Because of your history, I am sure your onc will keep a close eye on your kidney function and adjust the dosage of taxol, if necessary. I have only one kidney, and had surgery on the other kidney, so my doctor does monitor function, and so far everything is good. Ask your onc to tell you her plan for monitoring.
I am surprised that your onc said she cannot reduce your dose if you have problems. Again, maybe you will be getting a very low dose. I would ask for clarification.
Many people do experience a rapid response to taxol. I feel much better since treatment began. I have not yet had scabs, but I have seen a big drop in tumor markers, and they are usually an accurate reflection of response or progression for me.
Is your onc aware of your sensitivity to anti-histamines and steroids? What is her plan? I do think that the premed student are needed, at least for the first two infusions, but again -ask your onc if there are alternatives or ways to handle the issues.
I don't know if I have provided you with any reassurance. I do hope that you get answers from your onc that help you decide to go forward with treatment. You can always stop it if you have a bad experience. Remember that you have the final say in your treatment plan.
Please let us know if you have more questions. We are here to support you.
Hugs and prayers from, Lynne
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Thank you so much Lynne, my husband died of cancer and last year was all around the cancer he had. He refused chemo and chose cannabis oil instead as he was diagnosed Stage 4 straight out ( a rare cancer), so just had radiation. Anything else would really not have added anything to his survival only taken away from his quality of life...he outlived Doctors predictions but it was very difficult and challenging for me as he never coped well with hospitals.....
I am finding it hard to trust the Onc because of the hair loss comment, although she did change one pain med and said the new one would work better and I have only needed one top up morphine med in last 3 days instead of two per day......so that IS a big change and the first bit of hope and positivity I have found........
My sensitivities are on my long allergy / intolerance sheet on the computer......she knows I don´t like the Dexametasone as I am taking it now for pain and to reduce nausea..........just 4mg a day........as anything more makes me feel vile....
Anyway, thank you for responding....glad I am not alone....I don´t feel as alone now........my tumor markers are still in the normal range and they were first time round as well....which makes no sense to me having seen the scan image where I have multiple metastases in back and ribs......
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Hi Lily,
I'm so sorry you find yourself in this position. The beginning is so very scary and overwhelming. But as you arm yourself with more knowledge, I hope it will help make you feel more confident in making the best treatment decisions for yourself.
A session of chemo refers to a treatment of chemo, or a day of chemo. A cycle of chemo is a series of chemo, and depending of the chemo regimen, cycles can be varying lengths of time. A cycle of weekly Taxol can be 3 consecutive weeks of once a week Taxol, followed by one week off Taxol, so a total of 4 weeks/cycle. I for instance have my Gemzar/Taxol, in a 2 weeks on, 1 week off cycle, so I have a total of 3 weeks/cycle.
I do second what Lynn said about the pre-meds for Taxol. Definitely discuss with your MO your concerns about the premeds you will need for Taxol. However, you will however probably need the premeds for the first 2 infusions, to make sure you don't have an allergic reaction to the Taxol. I for one hate having to take the steriods, but with the dosage of Taxol I am getting, I'm told I need to do them, and frankly I'm a little afraid of how I'd react to the Taxol without them, so that's something to think about too. I did ask for the lowest dose possible though.
Tumor markers are just one way for MO to tell what might be happening in your body, but they are accurate for some people and inaccurate for others. Because of the inconsistent readings for some people, both of my MOs do not rely on them or even do them. Perhaps you are one of those people where tumor markers do not reflect what cancer activity is going on in your body.
You are absolutely not alone, which I why I love coming to this site. This is one place I can come where I can find answers to my questions, and where people really understand what its like to be in my shoes. If you have more questions, please ask away, we are here.
PB
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I'm hoping for your input, ladies, and am writing on behalf of my Mom (stats below). She was diagnosed de novo stage 4 with mets to lungs in February. She started one-hour-weekly Taxol infusions at 150 mg/m² and had 2 treatments with lots of SEs, the last of which ended up with her in the hospital for a few days with dehydration and extremely low potassium.
So after a week off, she returned and completed 2 more weekly Taxol treatments were reduced to 120 mg/m². She handled week 3 okay, still with extreme diarrhea. After treatment 4, she felt progressively worse as the week went on despite a new med for diarrhea and supplemental potassium. Friday night she ended up in the hospital with neutropenic fever as her white blood cell count had tanked. She was just released this evening.
So my question is - is there a "standard" weekly-dosage of Taxol? I have researched and all the studies I find are based on 80 - 100 mg/m². But I haven't found any definitive on what a standard weekly dosage is. Also, does anyone know if Taxol is prescribed on a Flat Fixed Dosing vs Body Surface Area Dosing?
We will be meeting with her oncologist at the end of this week, but I am trying to educate myself prior to the appointment. I had dose-dense Taxol back in 2006, but experienced nothing like the SEs my Mom is having.
Mom's Stats:
DX 2/2019, De Novo Stage IV, IDC, Left, 9.3cm, metastasized to lungs, ER+/PR-, HER2-Chemotherapy 2/14/2019, Weekly Taxol (paclitaxel)
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lilahope- ian so sorry your mom is going through this.
I don’t know the specifics about his weekly taxol is dosed. I can tell you that my MO said that there is enough room in the affective dosage of taxol that she can reduce the dose twice before she worries about it not being effective. My dose has been reduced once due to anemia.
I have Ben firtunste snd my wbc has remained normal. My anemia level has been as low as my MO will allow before I have to get a transfusion.
I am sorry I don’t have any answers for you.
I might ask your SmZo if a once every 3 week dose might be more tolerable. I had heard that this treatment is harder to deal with but I don’t know. Worth asking.
Know that I am thinking of you and your mom.
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Hi Lilahope,
The 150mg/m2 of Taxol seems like a big dosage for weekly Taxol. Like you mention I usually see 80-100mg/m2 for weekly Taxol. I'm doing a dose dense Taxol and get 175mg/m2 of it with Gemzar. I get that dosage of Taxol once every 3 weeks though, and not weekly.
Maybe a smaller dose of Taxol would be better tolerated? I'm so sorry she is having such a tough time on Taxol and hope a solution is worked out soon.
PB
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As with everything to do with breast cancer, I think that it is all individual. Certainly chemotherapy treatments have a certain routine but that can be changed up-and-down and much depends on those all important neutrophils. When I was first diagnosed with breast cancer in 2012 I had the A/C and T over about 4 months. My cancer was very aggressive and so I had what is called dose dense chemotherapy. The T stood for Taxol and Taxol comes in different forms, mine being paclitaxel and at that time I was given approximately 187 mg every two weeks with neupogen subcutaneous injections for a few days after each session. Normally that dosage would be given every three weeks with no neupogen. They wanted my chemotherapy to hit the cancer as quickly as possible. Now that my cancer has metastasized I have been on a couple of different regimes~~Ibrance and Faslodex for a year before it stopped working then Capecitabine (Xeloda in US) which caused hand and foot syndrome. I stopped that because of the syndrome and am now on low dose paclitaxel~~ 127 mg weekly for three weeks with a week off but really it is two weeks off. I have it every Thursday for three weeks and then next Thursday is my week off which means the following week I start again. It sounded a bit confusing, three weeks on and one week off because it really is five weeks in the cycle. I have been tolerating it well other than being tired a lot and I have not had any neuropathy yet. This week is my third week and I will see my oncologist before the next cycle and will be asking what happens after cycle six. I hope this has been of some help but again, each of us is individual as is the treatment.
Marian
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thanks 50s girl . I’m headed in for my second treatment today. I hope your doing well and have a wonderful day. How long do you ice your hands and feet? Before,during, and after treatment?
Michelle
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Michelle, i hope today’s treatment goes smoothly. I usually start the icing when I take the premeds, so a half hour before the taxol. I continue icing until the end of the taxol infusion. I have to confess that I sometimes take a short break if I feel like I am turning into an icicle.
I had my 8th weekly treatment on Tuesday. My red blood count and hemoglobin really dropped this week, so I had a transfusion of red cells yesterday. I have to admit that I have a bit more energy today and can walk up the stairs without having to rest to catch my breath. As a side note - I had to take Tylenol and Benadryl as premeds for the transfusion, so yesterday afternoon was nap time! I couldn’t refuse the Benadryl because I had experienced hives from a transfusion years ago.
I have next week off, then I will begin a schedule of three weeks on/1 week off. My onc explained that after 8 weeks many people have low white counts, and the 3/1 schedule helps the counts to rebound. In my case, my wbc stopped falling after the first three weeks, but also feels that.changing to the 3/1 schedule will help to delay the onset of neuropathy. I am all for that!
I still feel really good. I haven’t had a scan yet, but I hope taxol is knocking out all those nasty cancer cells. I want to stay on this treatment as long as possible.
I hope everyone is doing well.
Hugs and prayers from, Lynne
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Lynne (50sgirl) thank you so much! I’m on my way to Chicago now. I’m thankful for all of the information you continue to give me. I’m so encouraged by your spirit and positive attitude. I’m praying it knocks those cells out for you too! You’re in my prayers!
Love,
Michelle
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My schedule is 2 weeks on/ 1 week off.
Just finished 12 weeks with hair loss as the only side effect.
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Leee, I am glad to hear that you have only hair loss as a SE. Yes, it would be nice to keep our hair, but I am happy to feel good. WOOHOO for 12 weeks for you. I hope you continue to have a relatively easy time with taxol.
Hugs and prayers from, Lynne
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Snooky1954: How long before your began chemo with taxol did you start taking VitB12? I am really worried about neuropathy. The things I really love (doll making, jewelry) require dexterity. Have you tried icing? I hear that helps as well.
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Hi Elderberry, My Onc recommended it at my 2nd txt, so I would have started it right before # 3. It seems to be working. I cannot do icing. I have Raymounds (sp) disease in my hands and feet and the cold would be so painful. I also take a complete Vit B Complex. Good luck.
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What is the vitamin B12 supposed to help? I start cycle 6 this week and no neuropathy as yet but last week my heels started to crack even though i have been dutiful. Now they are peeling too. I see my MO Wed. and will be asking about what will be next.
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Marion, When I told my ONC that my feet were starting to tingle, he told me to take B12. 500 to 1000 per day.
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Marion, My turn to ask. haha what is making your heals crack? and what have you been dutiful about? I'm on taxol, low dose (80).
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Tomorrow is MO so I will be asking about B12 and dose Snooky. Is your avatar name from the books with Snooky many years ago? I think it must be the Taxol and I am on low dose 127 mg. Dutiful is using a cream 2-3 times a day that a friend who was on Xeloda recommended. Have you had any foot problems at all? Xeloda made my feet much worse and they were bright red and gross peeling all over after 4 cycles so I switched to Paclitaxel.
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Thanks for the info Marian, and no about the "Snooky" question. About 20 yrs ago, I was heavily into doing family and friends genealogy. I found that if your name was Susan, (which mine is) they usually calluled you Snooky or Sudzy. So when the internet came along and I needed an I.D., Snooky was a no brainer! Been using it for years! I wish you the best of luck on taxol, I've been fortunate, only real SE's are fatigue. (I also see my ONC in the am and a taxol treatment)
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I finished my 8 weekly Taxol treatments, had last week off, and started cycles of three weeks on/ one week off yesterday. Yesterday’s session was uneventful (yay). As I think I stated previously, my MO believes that changing to that new schedule after the first 8 weeks will held delay neuropathy and also help blood counts rebound. I had a blood transfusion two weeks ago. That, plus the week break helped my hemoglobin go from 7.2 two weeks ago to 9.3 this week. I also have had a bit more energy. It will be interesting to see if it continues to improve or begins to drop again now that I have had another round of Taxol. I have not yet had a scan since starting this treatment. I sure hope it is working.
Hugs and prayers from, Lynne
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Lynne, I am really curious about your chemo plus Ibrance/Faslodex history. I would love it if you happen to see this soon because I see my MO this afternoon. I note that you were stage IV right away whereas I was not. However I also took anastrozole first I also took anastrozole first then after my stage IV diagnosis (4.5 years after BC diagnosis.) I then took Ibrance and Faslodex for one year until an MRI showed progression. Then I was on Capecitabine for 4 cycles before my feet got so bad and I was off to Europe. I start cycle six tomorrow but today I expect to find out what is next. I probably wrote somewhere that the protocol here is six cycles. Going back to the beginning, I did have high-dose Taxol, paclitaxel then too. Anyway I am interested that you will be having more paclitaxel.
Marian
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MarionElizabeth, I took anastrozole alone when I was first diagnosed. It worked for 13 months before I had progression to liver ( I had bone-only Mets up till then). I then had Faslodex and Ibrance for 22 months. My breast tumor disappeared completely, my bones remained stable. The liver Mets disappeared for a while but they reappeared and progressed at 22 months. Next I tried tamoxifen. I felt very ill from that little pill. I had severe bone pain throughout my body, no appetite, no energy, liver Mets progressed, and bone marrow was impacted. So after just three months of tamoxifen I moved on to Xeloda. I felt great on xeloda, but, unfortunately, existing liver Mets doubled in size and number of tumors increased, and after just three months of xeloda I was given the choice of clinical trial or taxol.I chose taxol because i felt it was a proven treatment whereas clinical trial was not. My MO has told me that I will remain on taxol until it stops working or SEs are intolerable or neuropathy sets in. He said that neuropathy can be permanent so he feels it would be a reason to to move on. I am happy with the plan because I don’t want to limit my survival time by stopping a treatment that is working. I don’t have any way of knowing what will or will not wor in the future, so I feel that I have have to hang on to the good ones as long as possible. I hope that this helps. Let me know if you have specific questions.
Hugs and prayers from, Lynne
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Lynne, my MO said that she has had patients on paclitaxel for 1-2 years so i was very happy to hear that since like you, it has been good for me with no progression and no neuropathy as yet~~that would be a game changer for me too. I will have an MRI and CT again in June and we will see if I am still stable. She has lowered my dose to 80% from 90% of regular dose and so tomorrow it is onward. I am quite happy with her decision. Actually it was a GPO who told me the protocol was 6 cycles and gave me a handout saying same but my MO says she asks for permission and given circumstances she has never had a problem. Big relief!
Off to bed with chemo tomorrow. Thanks Lynne.
Marian
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Marian...thank you for your post, it just made my day! I've been on Taxol about 8 months now, and starting to freak out about my upcoming scan next Friday, and that Taxol will start to fail me soon. It's been working well for me so far and I tolerate it well, so it gives me hope to know that people have been able to stay on it for 1-2 years.
PB
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pboi, it is nice to know that I have made someone's day. I was very happy too. Do you know what your dosage is? I will find out exactly what 80% means when I go to this afternoon. I see that I need to update my stats at the bottom.
Marian
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Marian...I'm not on weekly taxol, I am on taxol/gemzar. I get taxol/gemzar once every 3 weeks. Then gemzar only second week, and 3rd week off. The dosing for my taxol on that schedule is 175mg/m2 and based on my weight, I get 278mg of Taxol during that infusion.
PB
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pboi, that number of 278 mg even every 3 weeks sounds high compared to what I have ever got but if it is working and S/E are tolerable all I can say is YAY!
My lab work done Wednesday was very good pre chemo which was yesterday. The only thing that worries me is CA 15-3 which is done once a cycle. The last was 33 so barely above normal which is 30. When I saw my MO same day as blood work the tumour marker was not back yet. But yesterday I picked up my results just before chemo and noticed that it was 41.5. My MO was notified but said not to worry. I know that I should not worry but I still do because it has always been normal since August/2017. Does anyone have any comments?
Happy Easter to all,
Marian
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Marian I was told tumour markers are not that reliable.....I had a 5cm tumour with completely normal tumour marker blood results..... I understand they are seen as indicative of something when there is a big change....
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Lily, I heard the same all through my five years I all through my five years since 2012 breast cancer. Your stats look very similar to mine including 7/14 nodes, Stage, and hormone receptors. However mine is stage IV so when there is a change it can make a difference. How long have you been on paclitaxel? However I do see that you had radiation in 2019. What was the reason for the so many years later or has there been a change in stage?
NightNight,
Marián
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