Weekly Taxol for Stage 4
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Shazza--yes, Abraxane is the "new and improved" version of taxol. Easier to tolerate (so they say) and more expensivie. But they're basically the same drug.
Even though I'm NED, my onc seems to want me to take more cycles and has mentioned more than once just staying on the drug indefinitely. Of course, that's not what I want to do which is to quit immediately, but what I want and what I should do might be two different things.
What seems to bother me most at this point is no hair and being tired and napping all the time. How do you do after so many cycles?
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Alexgram, my hair has been growing back for a while now. it's still really short but looks like an actual hair style choice not cancer hair at the moment. My eyebrows and eyelashes are only just starting to grow again.
My fatigue seems to have lessened not increased over time and while I'm tired I don't think I'm as bad as I was after say 6 cycles. They haven't used long term taxol before at the hospital I go to I'm the first one to go over 18 weeks. They often ask if I'm happy to carry on. I always say yes because I'm not NED just stable with a lot of bone mets still and some lung mets and it's better the devil you know than the angel you don't. I'm reluctant to change chemo. I don't know what I would want to do in your case as I'm over going to the hospital every week and know I would find it even harder if I had no active cancer.
Would they be prepared to give you a chemo break for a while. Say a couple of cycles off. My Onc has said I can do this if needed
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Shazz, Glad you are back and that your folks are safe and relatively sound right now. I hope you can bank some days off for some vacation time. Maybe by the time its spring or summer?
Also I appreciate the perspective you have on Taxol, its encouraging. I felt like a shaky little wreck the last few days, but maybe that will clear up by tomorrow. Ever hopeful!
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Shazza--thanks for your response. So hair can grow back and fatigue doesn't always get worse. That's good to hear.
I'm assuming that if I stop taxol (Abraxane), I'll progress at some point. I'm also assuming that if I don't stop taxol, I'll progress at some point as the cancer will mutate and the taxol will no longer be effective. I guess one question is whether there is a significant difference between those two points in time. If I stop taxol now, when I do progress, it should still be effective to beat the cancer back. If I don't stop now, I won't be able to use taxol again. So there's that too.
I'll report back on my next onc visit as we continue to decide what to do.
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Hi all. taxol 38 today was uneventful. Hope everyone is getting their SEs and port issues sorted. I've just started getting Acid reflux these last couple of cycles and wonder if it was all the antibiotics I had with my infected implant that has set it off. I hadn't had problems before.
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Hi all, completed #29 taxol today, uneventful. However, have to say last week was my worse week so far in terms of fatigue. I had had a very busy week the week before & didn't get the rest I usually do, so perhaps that played into it, who knows (that was my week off). I continue to have some neuropathy, mainly in feet, numbness so far. Bums me out, but tolerable so far. Hair continues to grow some, nothing fantastic, but I'll accept any growth! I'd be very happy if the front and crown filled in. I've had GERD for years & noticed the taxol is hard on it, I take protonix and it helps a lot; also keep head of bed up some during sleep. I do believe high dose antibiotics can also aggravate or bring on the condition as it takes out the "good bacteria." Yogurt can help replace the "good bacteria."
Hope all of you get your ports working well, they are great when they work! Shazza, glad your parents are at least safe and somewhat settled for now. You continue to amaze me with your increased energy and little s/e from taxol. I'm hoping to jump on the energy bandwagon anytime. I think if I could still take walks it would help, but my foot stress fx won't allow me to & continues not to heal.
Alexgram, I'm very interested in what your onc has to say about your point of view on stopping or remaining on taxol. Wow, NED! How many cycles did it take to get to NED? Where were your mets? Amazing and encouraging.
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hello all
just wondering if many of you have had the runs with this ,lately I have had it bad .I hope it is something that will pass in time .I have been feeling the fatigue also but I can handle that . im just afraid that my next scans are going to show progression in my lower back ,as it has been hurting so bad ,if I stand up longet than 10 minutes I hurt so bad I have to sit down to take pressure off and then it still hurts some but eases up the longer I sit . I have already had radiation done to that area and it did help for awhile but boy lately been hurting bad ,I have the fentynel patch and take hydrocodone for break thru pain but even that doesn't help .hope all is well for everyone ...
love chris
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Chris,
I had the runs for during my first 6 to 8 treatments but that has settled down now. For the last two or three weeks I have been almost normal. My runs were made worse initially by radiotherapy to my bone mets (sacrum) which really upset my bowels.
You mentioned that you had radiotherapy to your bone mets. I don't know how long ago that was but you can get something called radiation recall many months after treatment. It usually presents as a rash/dermatitis of the skin over the irradiated area but my onc said they have seen a couple of cases where they believe that it is causing inflammation in the treated bone, esp if it is associated with a joint. It is triggered by chemotherapy and taxol is one of the offenders.
Another possibility for an increase in bone pain is your bisphosphonate treatment, Zometa or what ever you are given. Have you changed your bone juice recently?
When is your next scan? If it still some way off and you are in pain, you should speak to your oncologist and see if you can bring the date forward. It may be nothing more than arthritis but you should get it checked out.
Shazza, I always look at your picture with hair envy. I look like Gollum on a bad hair day. Sorry to hear you are having reflux There are plenty of meds out there that can deal with it. Anything ending with "-prazole" indicating it is a proton pump inhibitor should do the trick.
SyrMom, How long has it been since you developed the stress fracture? I fractured my femur at the end of March and although the scans and X-rays suggest it is healing slowly it is still giving me a lot of pain, especially after treatment.
If the energy bandwagon is coming past, slow down a bit so I can jump on. So much more tired this week than last but that could be because I have been out and about more than usual and have not rested nearly as much as I do usually. I think I am being told by my body to slow down.
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Oh, Chris, I can really feel for the worry you have about your back. I think that Spring has some practical ideas about bone pain, which can help open up the possibilities. But with mets, any pain seems to create a field that is ripe for concern. Its something that rides along in the wagon with me, sometimes quietly but sometimes not, which is when it grabs the reins and goes where it wants to go. Mixed metaphors, I know, I know.... Pushing up the scan date sounds like a fine idea to me, if it does to you.
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SyrMom--it took three cycles to get to NED (9 infusions). When I was originally diagnosed I had 5 spots in my bones (both hips, 2 spots in my spine and left clavicle). Then, my intramammary lymph nodes on breast cancer side started lighting up and more of them were lighting up. I never really got the number of lymph nodes.
BTW, they biopsied the intramammary lymph nodes (after they lit up on a scan) and were '100% sure" they hit the right spots and they took multiple samples. The biopsy was done by the head of radiology and was CT guided. Totally nothing there. Then the next scan shows more lymph nodes and more lit up. Guess they were wrong. Stuff happens.
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Chris, I too had the runs with taxol and I still occasionally get it a couple of days after treatment but mainly it has settled down. I think the pain meds are constipating so they each seem to cancel the other out.
Re back pain I think SW had lots of good advice and for pure peace of mind it surely would be a good idea to have your scans updated. Also you may simply need to get your pain meds adjusted. You might be having nerve pain as well as bone pain or your meds may not be strong enough. It can take a while to get the balance right. I take lyrica for nerve pain as well as the fentanyl patch and oxycodone. I found difene (nsaid) effective but had to stop taking it as it caused gastric problems for me. One of the other ladies, I think it's chrissyb, takes a natural form of nsaid (I've forgotten what it's called - could be turmeric or curcumin) which works for her painwise and which isn't too harsh on the tummy. My onc disagrees with taking any alternative meds so I haven't tried it.
Anyway, Chris, I hope you get some relief, both mental and physical, very soon. We're balancing on this tightrope between treatment and disease and it's hard to figure out what's causiing which symptom...
Thinking of you {{hugs}}
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Alexgram, thanks for the info - very happy for you.
Springwatch - my stress fx began last October!!! Just from walking!! Since that's the only exercise I did & enjoyed, it's been real frustrating. I also have a bunion on that foot and it makes it more unstable; but I really did nothing but walk and nothing too fast or harsh. It just won't heal and I'm not a candidate for surgery at this point; nor do I want surgery as there's no guarantee I'll heal then, either! I've always been a great healer, until now.
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thank you so much ladies for all the help .the fatigue and the runs have been my only side effects so I actually feel lucky . you all are amazing . my mo said we will be doing scans soon to find out whats going on .thank you again
love chris
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Chris, Fingers crossed that your scan results show nothing worrying.
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I have more scans booked in for a week Wed. CT of the chest and diffusion-weighted MRI for the rest of the body. It is very soon after my last scans which showed a good to excellent response to the taxol and RT, so I think/hope this is more to do with the radiologist being interested in using my scans for a presentation. My onc mentioned it in passing when I first got my results but I didn't really pay much attention as I was more interested in the results.
Aoibheann, Some time back you mentioned that you were worried because you had developed another compression fracture of your spine. I was listening to my radiologist on youtube, mostly to see the kind of stuff he is doing if he uses my scans, and he mentioned that compression fractures of the spine are common, mainly because where the tumour has reduced or disappeared, there is nothing left to support the vertebra. Sounds to me like a double edged sword. Good news, the tumour has reduced in size; bad news it has left you with a fracture. I read somewhere else about having cement injected. Is that out of the question in your case?
Had uneventful 11th taxol yesterday. Port still behaving itself and we got the blood draws OK.
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Hi Springwatch, I'm glad to hear all went well for your 11th taxol infusion. It's great that your radiation therapy was successful, chemo brain here can't recall where you have your mets though... I'm curious about the presentation your radiologist is doing, can you let us know what it's about? Also what is a diffusion MRI?
Unfortunately my onc says my vertebrae are too fragile to have cement inserted as the cement is stronger than the bones and would cause further problems. My spine won't tolerate screws, pins or rods either. So nothing can be done here except hope that more vertebrae don't crumble away and compress, which is very frustrating. I would prefer to be proactive rather than reactive. I'm scared that I'll be paralysed ultimately (whinge, whine)..
Hope you are keeping well and enjoying the continuing good weather. Take care xx
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I know there is a debate about the meaning of tumor markers and I don't know if they mean anything BUT when my doctor called today to tell me mine had gone from 145 to 51 I felt pretty good.
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that's great news Brigadoonbenson. I bet it felt good.
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Shazz - The shameful thing is that when he called I was shocked and then he told me about the tumor marker and I kept waiting for him to give me some bad news that was the other shoe. Crazy what this disease does to one.
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always waiting for bad news. It's the stage 4 curse
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Brigadoon, That is good news especially if your tumour markers are reliable for you. The controversy seems to surround the fact that they are not reliable for everyone. My onc doesn't do them preferring to rely on scans instead.
Aoibheann,
I can't pretend that I fully understand what a diffusion weighted MRI is but they are supposed to be useful in indicating what is actually happening in the bone marrow, where the bone cancer cells are. It is just one method of looking at the bone, because one single test won't give you the whole picture. It looks at the fat and water content in the marrow which is reduced where there is active tumour. It is useful because if you are taking anti-osteoclastic medication (Zometa, denusamab, or a bisphosphonate) which most of us are, it can look as if the bone is healing on a standard CT, when there is still active tumour present. Versus a PET it can, I think, distinguish between flare response to treatment and progression. Overall, it gives an earlier indication when things are not working so you can switch therapies sooner. That is my layperson's understanding. It also shows up tumour in soft tissues, like liver and lymph nodes. I think the chest CT is to show my lung tumours although when I am having the MRI I have to hold my breath 3 or 4 times consecutively so they must be looking at my chest too. To be honest it is a little beyond my ken and I have a science background.
I think the radiologist wants to use my scans as he has scans before and after I fractured my femur. The femur is trying to heal while I am having chemo so the scans are showing abnormal results in that area not necessarily related to the cancer.
Sorry to hear that you are not a candidate for cementing, pinning, etc. I know you are concerned about the paralysis risk but if it is any comfort my mother had severe osteoporosis and multiple compression fractures but was able to function physically right up to the end of her life. Her only limiting fracture was one to the shoulder which left her unable to raise her arm fully.
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Hi Ladies - question to ask you: I had my third Taxol tx yesterday and I still feel so normal it's kind of worrying me. Also, my liver and spine are occasionally thumping with pain, but I should start feeling yukky by now and just feel so...normal. The thought has crossed my mind that it was accidentally saline solution instead of Taxol they pumped into me?? LOL. I wonder if just coming off Affinitor, which was so brutal, that my body is getting used to Taxol quicker? My hair is slowly starting to fall out, and I just mean a little when I run my fingers through it - nothing in the shower yet. But today is only day 15 so I guess I have another week or so. I guess my main worry is the pains in the cancer areas - liver and spine - hurting more. Did that ever happen to any of you, and maybe it hurts when it is dying off, or just wishful thinking?
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Benjnate, Yes, I felt strong sensations in chest and hip when beginning Taxol. I felt pretty unwell then, too, but later had a week when I thought they subbed saline for chemo, like you, because I felt fine!
Now at #13, I feel much less specific sensation, more generalized fatigue after the first three days. Nausea is faint at times. Heartburn, I really stay on top of that with a daiy Pepcid Rx. Hair is continuing to thin, but I had it cut really short early in the process, so it is only now really getting too thin to wear without attracting unwanted attention.
Good luck with this treatment. Its working for me, so far.
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Thanks MamaMe, you made me feel better. Guess I'm just going to take this time and enjoy it. And yes, the heartburn is brutal at times; I am on Oxempropal, or something like that - generic for some expensive OTC stuff. I would die without it. Do you feel like the Taxol is working? I hope so for you. And by the way, you live in the most beautiful state I ever visited - lucky you!
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benjnate I have found Taxol a fairly easy chemo. Initially I got a fair bit of bone pain which I think was the taxol working. It's actually got easier as I've gone on. I don't have nearly as much fatigue as I did earlier. I'm hoping to get over a year on it. 9 months down
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benjnate, Your experience so far sounds normal for taxol. Increase in bone and joint pain is common. I had some increase in abdominal pain at the beginning of tx but that has got much better as time has gone on. I second ShazzaKelly who said it is a fairly easy chemo. Well tolerated my onc and chemo nurses keep telling me.
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Thank you Ladies, I appreciate the reassurance. I didn't take the anti-nausea drugs this week and I think that is making me feel better too, since no real nausea issues. Please just let this Taxol work for a looong time for all of us!
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#30 taxol completed today. Tumor markers stayed the same this month; scans in August. Bone pain usually kicks in around day 3 or 4, it varies, sometimes very little.
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no 39 for me today. My hair is starting to fall out again just when it was growing in nicely. Why it's suddenly decided to do that during cycle 13 I don't know.
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Oh, sh*t, Shazza!! Can't believe it about your hair!! So sorry! Guess we are all in for that, then. Keep us posted. You have a beautiful head of hair.
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