Weekly Taxol for Stage 4
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Rt_chicago, How are you feeling today? Does the rash look better?
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Hey 50sgirl thanks did checking in. It does look better today the ointment my MO prescribed seems to really reduce the itching. Treatment is tomorrow (a day early because of the holiday) so I’m praying he’s right. I’ll keep you posted.
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rt-chicago I will be in the chair tomorrow as well. Will be thinking of you and hoping for the best.
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thank you and I you 🤗
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An update regarding my PET/CT last week after 3 months on Taxol - the MO called and said that there is reduced activity in liver mets when compared to the baseline scan done in March2019; with the bone mets she said 'they look stable' which I think is the best I can expect at this point.So I'll continue on Taxol for another 3 months.The side effects (nausea and fatigue) will be something that I will have to deal with. Taking Nupogen shots for my blood count also causes bone pain. Claritin doesn't do much to relieve pain (I have read that this works only for some people).
Did anyone see any hair growth after some weeks on Taxol? I have lost about 60% of my hair, even with cold cap. If I continue, I think I may lose all my hair. But it is a small price to pay!
Hope everyone is enjoying the long weekend.
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S3K5...so happy to see good scan results, yay! I was on dose dense Taxol and lost my hair. 6 weeks ago I’ve moved to weekly Taxol and since then my hair has started to grow back. Trying not to get too excited about the hair returning though, I’ve seen a few posts here where the hair returns for awhile and then for some unknown reason falls out again.
I’m doing ok, struggling with a sinus infection though. Very excited this next week is my off week, so the fatigue will be better so I can enjoy some summer fun with my kids.
Hope everyone is doing well!
PB
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Sk35... I started taxol on 2/13/2019. My hair started falling out after the third infusion. It fell out steadly for about three weeks. I would guess about 80% fallout out, and then it quit. I'm still on taxol. And I "think" it's filling in. Hard to tell as I never buzzed it, I just cut remaining strands down to about 2 inches.
Losing my hair was fairly easy for me. This is why. My dau-in law's niece, who is about 10, had a headful of hair. When she was 2 it fell out almost all at once. It has never grown back, no hair anywhere on her body. And this child goes to school, and all other activities not letting it bother her. She's my inspiration.
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About hair loss —i was on weekly Taxol for 6 months. I never cut it or shaved it and I didn’t do cold capping. Took about four weeks for it to start falling out but it fell out slowly. I think it was about three or four months til I was completely bald. Nothing grew in til I was done. Six weeks after I finished I had what looked like a very low buzz cut.
It’s now more than a year later and my eyebrows still are not fully in but I do have about three inches of normal hair. My hair has always grown slowly that may be why it didn’t fall out so quickly since chemo destroys fast growing cells.
The sides and back grew out much faster than the top especially the front. The front of my hair is noticeably shorter than the rest. I’m told that’s a normal growth pattern for most people.
I haven’t had a haircut yet because that front area was so short and thin, I want to have some length there so I can get the sides cropped short and let the top catch up. I still wear my wigs. I kind of love them, except in July and August.
Andmy hair grew in completely white. I knew I had a lot of gray and I had been dyeing it before. But it came in 100% white. It took months before I saw some dark strands coming in. I’m still about 90% white which I might just stick with if I decide to go wig-less. Been thinking about tinting it with temporary pink and lavender too, might as well have fun with it!.
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Thanks for your response, Pboi, Snooky and Olma. I guess we are all different - I will have to wait and see what my hair does!
Pboi, hope you can enjoy your week off. My energy level is better during my week off. Hope your sinus infection clears up soon.
Snooky, what a lovey inspiration from a child! How is your neuropathy? Did the reduced dosage help?
Olma, I will be just happy to have some hair growing back in the bald spots, even white ! It is fun to experiment with colors (why not?). Why did you stop Taxol? Did it work for your bone mets? What treatment are you on now?
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S3K5 — Since I am HER2 positive, I was on Taxol plus Herceptin and perjeta as the first line. We followed the CLEOPATRA protocol which is six months of a taxane and then continuation of H&P. If youre HER2 + and respond to chemo you go off until (unless) it is needed again.
So now it’s H and P and anti hormonals
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Checking in after 10 days or so off. We had a good long weekend (Canada Day) despite my continuing and increasing pain. I had my MRI of right brachial plexus on Thursday and look forward to the report. I saw my doctor who does nerve blocks on Friday and he decided against another once since the last two have been ineffective. He was able to access the MRI films but there was no preliminary written report even. He does think he sees a change from last November and March MRI's but of course says that with caveat of not being a radiologist. He did do some peripheral injections into the scapular area where pain radiates from down through the shoulder, arm and hand where the worst burning and throbbing is. I am taking more breakthrough Hydromorphone along with my Metadol increased 25% about a month ago and an increased neuropathic med that so far does not seem to work. Thanks for letting me vent here.
Marian
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Marian, I am sorry you are experiencing so much pain. I hope you find something that gives you some relief. Does the pain interfere with your sleep? Did you receive the results of the MRI?
Hugs and prayers from, lynne
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this is how much hair I have on weekly taxol with no breaks. I had no hair in October.
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leftfoot, I love your hair. Mine is coming in a bit and hopes it gets like yours.
So the MRI shoed no progression. Yes, it was good news but it seemed I was the only one upset about the wait for results. It was not a pre cycle oncology visit which I have every other cycle but instead, GP oncology doctor I like. She had a quick look at the results prior to the appt. but because it seemed fine, she did not even print it. Nor did she know that a year ago a radiologist here at BCCA, read that MRI and saw no progression. My MO for some reason, sent it off to the head radiologist in Vancouver and he saw progression. Needles to say, once bitten, once afraid. That progression led to the end of Ibrance. GP realized I was really upset and while out getting the written MRI report, also called the BCCA pain clinic and they sent a nurse up. My MO was also made aware. At the end I said I was going to start adding alcohol to my narcotics. I think it was hard for everyone though my husband fell asleep for part of it. Then we did go to one of our favourite pubs overlooking the ocean. LOL.
Yesterday I got a call from the pain clinic and my metadol prescription has been increased and in the afternoon I had chemo. I was pretty spaced out with the increase along with the hdromorphone I take for breakthrough but it is done until next Thursday. Lynne you asked about sleep. I do sleep very well these days maybe because my last dose of Metadol is before bed. For all, Metadol is Methadone. Thanks for my long vent.
Marian
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For those whom been asking, no the every other week has done nothing to decrease neuropathy. In fact, my left leg, in addition to the tingling is causing constant pain. From my ankle to my shin up to my knee cap hurts and then the muscles in my upper thigh hurts up to my femur. I know I have arthritis in that ankle and mets in the femur. If it's not the taxol, I'm wondering if it could be the bone tx. They took me off zgeva and started the other one (it's an infusion). Sorry too tired to look up spelling. lol. And of course, it's all worse at night when you need to sleep. I have an infusion in the morning, so I'll be asking questions. Lots. At the end of July I will have been on taxol for six months. And although it is working, the SE's are becoming very problematic since I live alone and need to be able to care for myself.
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Snooky, sorry to know that every other week of Taxol didn't help. Did you find out what's the new treatment you are getting? Hopefully your neuropathy will reduce if the Taxol has been stopped.
It is hard to be alone and go through all these health issues. Do you have any reliable friends close by?
Please keep us posted about how things are going.
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S3K5 Thanks so much for your concern.....no, no close friends nearby. ONC hasn't stopped taxol yet but close.
Had an infusion today and one scheduled in two weeks and he said then that's enough. We'll do scans and then discuss out next steps. He did compliment me on staying on taxol for so long while living alone. He did say that the systoms that I have in my leg could be from Taxol or the recent radiation that I just finished. But either wayI he said it's time to stop it.
It's a shame that SE's are bad from taxol. It's a good drug and was working excellent. I'll keep you all posted.
HUGS to all
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50sgirl - Thanks for checking in. So I was discharged June 26th. I was Admitted for one week. On the day of discharge they discovered that I also had bilateral lower leg DVTs in addition to the bilateral PEs. Fortunately there was no change in my treatment plan and so I’m on Xarelto as long as the cancer is active and I’m on treatment. I resumed Taxol, H +P on July 1st and that through for a loop. So Inwas out of work for 2 weeks recuperating. Last week was the first week back to work and I was exhausted, Each day was a struggle. I made it to Friday but had to leave early. Fortunately my boss is very understanding. So far this week I feel good. Energy level is increasing but if it’s not one thing it’s something else. Diarrhea has returned and now I have Diffuse itching. I take Neupogen every 3 weeks so I’m due for my shot today and I also took some Benadryl so I will be passed out soon enough. So all in all I’m ok all things considered. It’s a roller coaster ride that I’m out enjoying it I’m hoping and praying for no more complications because I literally almost died
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https://www.spandidos-publications.com/10.3892/or....
The above link is a paper describing how taking curcumin with taxol increases it's effects. You can show this paper to your ONC. My Once told me not to take curcumin months ago....so, I don't know. Just passing along info.
S
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Leftfootforward, Your hair looks great. Mine is growing. The back and top look like a newborn’s hair - very short and thin enough to see most of my scalp. The sides are just peach fuzz right now. I might end up looking like a reversed-color skunk. The sides are white and the back and top are dark. It could be interesting.
Marian, it must be very frustrating that no one else’s realizes how upsetting and anxiety- producing that long wait for results can be. I would be imaging all sorts of things during that time. There really is no excuse for the delay. I am glad that your GP stepped in. How is your pain now. Did the adjustment in meds help? Sometimes it takes time to find the right balance, but I hope you can find relief without that spaced out feeling. Someone on one of the threads once said that treatments are like that whack-a-mole carnival game. We use that hammer to whack out one issue and another pops up. Its’s true for SEs, mets, and issues with caregivers, family members, and healthcare providers. It sure is hard getting rid of all those moles and getting back to living our lives.
Snooky, I am glad that Taxol has given you positive results. I am sorry that the SEs were so strong and difficult. Taxol has served it’s purpose for you, and it is good that you will be moving on soon. Let us know what your new treatment will be as well as how you are doing.
Steph, Wow, you have been through the ringer. I am happy that you are out of the hospital and are doing better. With all that you have been through, it is understandable why you would feel exhausted. Don’t try to rush things. Listen to your body, and take it easy until you are ready to do more. My dh was on Xarelto when he had bilateral PEs 3 1/2 years ago. He found Xarelto to be quite tolerable. I hope things continue to improve for you. Please keep us updated.
Pboi, I hope you are enjoying your break week and that you are having fun with the kids. Has your sinus infection cleared up?
Rt_Chicago, How are you doing? Is the ointment still working to reduce the itching?
I had an infusion yesterday. Today is my "red face day". I don't need a bloodtransfusion this week YAY! We'll see what happens next week since hemoglobin is heading down, as usual. I am scheduled to have scans on Friday. MO will give me results during Tuesday's appointment. I can pick them up from medical records earlier than that if I want to. I am still doing well. I haven't experienced any neuropathy so far.
I hope everyone has a good week.
Hugs and prayers from, Lynne
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Hi Lynne. The rash has completely cleared up so we believe it was sun related. I’m feeling great so far. Thanks for asking. 🤗 I will be praying you as you approach scan day and for wonderful results. Please keep us posted.
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Hi Lynne,
Thanks for asking about me. My sinus infection is still lingering, but slowly it's getting better. Haven't been posting much lately, the kids are keeping me busy this summer and I'm enjoying every minute of it : )
On my 11th month of Taxol now, and overall doing well. I have a little bit of tingle in my feet every now and then, but otherwise no neuropathy. I'm getting a little more fatigue as time goes on, and this last cycle had some trouble with heartburn/constipation, but otherwise doing ok.
Praying that you have good scans Friday Lynne! I scan in two weeks, my first scans since I dropped the Gemzar from my Taxol/Gemzar chemo combo, so I'm nervous.
Have a good week everyone!
PB
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Hi Lynne, hope your scan results come out with a positive outcome. Hope the mets are decreasing. What type of scan has your MO ordered (CT, PET/CT, MRI). I know it is probably too early to say if Taxol is working on the bone mets but liver mets should definitely show if the treatment is working or not. Is this your first scan or second one after you started Taxol? How often do you need to get blood transfusion? Do you take nupogen or neulasta for WBC? Good to know your hair has started growing again. Did you do scalp cooling? I am still waiting for my hair to stop falling, even though it has slowed down. Scalp cooling has helped me retain 1/2 of my hair.
I started Taxol in April and on July 1st had a first PET/CT which showed 50% lower activity in liver mets. I had to get blood transfusion for low hemoglobin last month but now it is started to drop again. I take Nupogen shots every week for WBC/Neutrophils. Today was my infusion day and thanks to the steriods, I am completely awake even though it is past midnight!
Good luck and please keep us posted about your scan results.
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s3k5- I had my infusion yesterday and have not slept. My husband called me manic as I git up at 3 am and started to clean. I’ve been cleaning all day. It was a productive day but I am looking forward to sleeping tonight. This seems to be my cycle- low dose steroids with infusion, no sleep for 40+ hours. Good news is I get things cleaned and organized. I’ll are it.
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leftfootforward , sounds very familiar! I hate the steroids and will be asking the MO to reduce the dosage. Next day, I notice a 'steroid crash' and I feel so depressed (crying for no reason!) . Good that you are productive when you can't sleep. With my depression and fatigue, I don't feel upto it to work. I sit and read for hours, which takes my mind off all the depressing thoughts. I have bone and liver mets, so the painful bone mets keep me awake too. My pain medication wears off by 3 am every day.
Did you do scalp cooling? Your hair is growing well. How long have you been on Taxol and what is the schedule? I am on 'two weeks on/ one week off' schedule. I love the 'off' week, when my energy is slowing coming back.
I like the fact that we can exchange our experiences and get advice from other women going through similar diagnosis.
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I can't take steroids either. Insomnia. My oncologist does not include steroids in my infusion for that reason.
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I’m on the lowest dose she will allow ( 4mg I think).
I am off the Benadryl now and only take Prevacid the day of with the steroid.
I am on weekly taxol and have been since the second week of Oct 2018. No breaks. I’ve had one dose reduction due to anemia but have tolerated it well. Mostly fatigue and the steroid induced insomnia for a day. It has taken care of my liver Mets. My brain Mets are not stable yet on this with hectoring and per jets every third week, waiting for a trial to open or end so I can get in a new super lapatnib like drug for brain Mets.
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There was a thread created recently about coming off long-term chemo. There were only two posts. The person who created the thread was on weekly Taxol for almost two years. The other person was on weekly taxol for four years. Can you imagine? That is my new goal. I want to be on Taxol for four years without progression. There, it is in print. So be it!
I had a CT scan and nuclear bone scan on Friday. The results were posted to the patient portal Sunday morning, and yes, I did read them. I met with my MO today to discuss them. It was all good news. My liver mets are significantly smaller. YAY! All my bone mets, that are in virtually every bone in my body, appear to be sclerotic - “probably as a result of treatment.” While I tend to worry more about my liver, this is the first time that I have seen any meaningful results in my bones. When I was diagnosed 4 years sago, my MO told me that healing of bone mets are difficult to identify because the initially look like progression. Well, after waiting patiently -WOOHOO! My bone scan was interesting. The results were a “SuperScan”, which is mot the same as a really good scan. SuperScan is an actual medical term. It refers to a scan that shows such extensive bone mets that all the tracer is sucked up by the bones, and there isn’t any tracer left to deposit in soft tissue, so the kidneys and bladder do not show up on the scan. Luckily, as I said, the bone mets seem to be sclerotic. Sorry for all the boring information. The important things for me to say are that Taxol is working, and I am staying on current plan. Today’s infusion was uneventful.
Hemoglobin did not drop below 8, so I will not need a blood transfusion this week. My wbc was down a bit, but it was high enough to get treatment. Next week is break week, so it should rebound. My hair is still growing, but I feel like the growth has slowed down. That could be my imagination.
I do not experience those highs and lows from the steroid. I guess I am just a weird patient. In case there is any doubt, I am not complaining. I will sleep like a baby tonight, and I will not be in a cleaning frenzy tomorrow. When I look around, it strikes me that an energy burst could be useful. I have neglected my garden, and I really have to pull weeds.
Well, I seem to have written a book. I hope everyone has a peaceful, joyful day.
Hugs and prayers from, Lynne
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Yay Lynne, so happy to hear of the great scan results!!! I too saw that thread about the long-term chemo. Wow, so amazing for those two women who have taken it for so long. I feel so incredibly blessed that I am on month 11 with Taxol now. I have been tolerating it pretty well, but this last month the fatigue is starting to hit harder, and I'm getting nauseated a little more than usual. So nervous for my upcoming CT scan next Wednesday.
PB
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PB, I will be thinking of you next Wednesday. I hope you receive good results. I wish scans didn’t cause do much stress for us, but those results can change our lives.
My DH and I might go to Martha’s Vineyard for a few days next week. Two of my sons are going with their families, and they asked us to join them. The timing is good since it is my break week. It would be so much fun, but that little voice inside my head fears that I would hold them back due to my lack of energy if my hemoglobin drops. I guess my dh and I could take it easy when necessary, and everyone else could do their thing. I shouldn’t pass up the opportunity to spend time with my grandchildren. My son said things are going to be relaxed, and they could do lots of chilling at the beach for the days we visit.I could handle that.
Hugs and prayers from, Lynne
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