Weekly Taxol for Stage 4
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Sandi, after 3 months on Taxol my tumor markers showed a dramatic decrease and the CT results corresponded with a marked reduction in tumor size & number both in and out of the liver.
My liver values and RBC and WBC have stayed within normal range or close to it.
My second scan in April wasn't so positive. My tumor markers had started to rise and some of the CT results were iffy. My onc and I agreed to push ahead with taxol a little longer, although we both could see the writing on the wall. I scanned again a few weeks ago and sure enough I have a lot of progression again and my markers continue to rise, so I'm done with Taxol.
I have only a couple of avenues left as far as conventional treatment and I chose the more aggressive in hopes of putting the brakes on a little. As long as my echocardiogram is fine, I will be starting doxil in a couple of weeks. I'm not expecting miracles and as a realist, I'm planning on spending as much time with family as possible this summer before our grandson starts back to school sometime in August.
We shall see what we shall see!
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hi all!!
Well 4th infusion, 4th anaphylaxis reaction. First & second week it happened 3 minutes into 100%, third week 3 minutes into 75%, this week it was 3 minutes into 50% & that was with extra premeds of 20 mg of prednisone X 2 doses. So not sure what the plan is, but i'm done with paclitaxol. I think she might try nab-paclitaxol. I think that's the only other drug allowed on the trial.
cheers, dee
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GG, that is awful! I hope that's your next trial drug works out okay!
I'm starting Doxil week after next and apparently reactions are common so my first infusion will be given slowly over two and a half hours with constant monitoring. Can't wait...
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GG27, I had an severe anaphalactic kind of reaction to taxol once and my Oncologist took me off taxol immediately. Having one reaction you are more likely to react again , and it is scary. I have now been on Abraxane [ non pac ] for 6 months . The specialist nurse said she wished all patients had abraxane as they get less side effects [ butt the cost is x12 ]!! I hope you get switched soon.
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GG27, i am SHOCKED you were not switched to Abraxane after 1st Taxol reaction. Have you been off treatment these last 3 anaphalactic episodes?
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Kattysmith..darn. It looks like you nade it to 6 months on Taxol. Did ypur MO get fresh bx for genomics?
I told my MO to keep me alive long enough to be eligible for new treatments.
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hi all,
I still haven't heard if there is any other chemo approved for this trial. I am still on tomivosertib but 50% dose as I had a severe rash on it, but this dose is good now.
I find it quite ironic that these trials have such a hard time finding participants but are so strict in the protocols. I get it, it's a trial & needs to have good guidelines, but I have to travel 7 hours each way for a CT scan which they won't allow at my local hospital. It's not like they have one radiologist reading every scan. Anyway, I have no idea what will be happening on Tuesday.... I'm only the patient. Just show up & don't ask any questions.
cheers, dee
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Hoping you will get some common sense accommodations that will let you continue with this trial
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Since low WBC (1.2) and ANC (0.3) cancelled my 3rd infusion of pacllitaxol, I will be starting 2 weeks on, 1 week off next week.
My 2 week labs were not bad in my opinion but my MO wished they were better. The Ca15.3 is still rising, but couldn't that be from die off...even at 2 weeks after starting Taxol? SGOT slightly decreased and AlkP continued to increase.. My MO said my cancer goes from 0 to 100% with nothing inbetween. Sigh.
So here I am , camping 6 hours from the infusion center. My DH will drive me back to treatment each week. We camped last week with my daughter's young family..taught my 11 year old grandson how to crab. I hope I am making memories for them.
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Sandi, I'm glad that you are getting to camp and that your grandkids were able to join you. Crabbing was so much fun when I was a little girl! I miss doing outdoor things; I backpacked for years in my younger days. I too am hoping that my grandson will have fond and lasting memories of me as well. He is 6.
You asked if I had a recent Bx. I've had three liver biopsies and the last one was in September 2019. The first two went very smoothly but the last one was an absolute excruciating nightmare and I ended up in the hospital for 3 days. I don't know that I want anybody near my liver again. I do know that I am still ER PR positive her2-negative. I have two common mutations and my tumor cells are heterogeneous - a mixed bag?
Part of the difficulty in treating me effectively is that like Alabama Dee, my tumors have neuroendocrine features and that's very rare. For that reason, few studies have been done on them. Although I do really like my old school MO at MD Anderson, he poo-poos any suggestion that this is a major factor.
I hope that your new treatment schedule works for you. I found that having a week off after 3 weeks of treatment really helped!
Best, Katty
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Hello All,
I am new to this thread. I was diagnosed metastatic last year with mets to sternum, liver and lymph nodes, ER+ Her2-. My original breast cancer back in 2018 was ER+ Her2 -, Oncotype 18, DCIS grade 2, 1.5 cm. Had a lumpectomy done followed by radiation and then was put on Arimidex. July 2020-Liver bx was done and sent for Tempus testing. For the past year I’ve been on Ibrance and Faslodex, but now there’s been progression so my MO will be starting me on Keytruda and Taxol. Tempus Testing showed that I have a high tumor mutational burden, in the 90th percentile. My MO says that’s not the norm for breast cancer. I’ve never had IV chemo before... scared and don’t know what to expect. Any suggestions about Taxolwould be greatly appreciated, Thanks!
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hi lafsunshine, so the main things to know about taxol are:
it will make your hair fall out. Some people either shave it off themselves or let it fall out. I just let it fall out but wore a thin cap for the duration to catch most of the mess. And you want one of those baskets on the shower drain to catch hair because otherwise you will plug up your plumbing.
it requires premedications before the infusion. They give those in an IV beforehand. They include an antihistamine which make you drowsy and a steroid which will make you wired. The antihistamine works faster so you tend to be sort of stoned. You need someone to drive you home. The steroid often kicks in later and might keep you up at night. You either need to be flexible about sleeping, be ok with being awake (netflix, scrolling instragram, someone who sits and talks with you) or you might need sleeping pills
it can cause neuropathy. Icing your hands and feet (using gel mitts and booties or make your own out of plain rectangle gel icepacks) can help prevent neuropathy. I've been on a taxane (first taxol then abraxane) for 16 months now and have very minimal neuropathy but I ice like it's my religon. 5-10 mins before the taxol and about 5 mins after.
taxol infusion is long - usually a couple hours (plus the premeds). I had extra icepacks and switched every 30 mins. I had an ipad with preloaded tv shows and podcasts to keep me amused. Nothing too mentally taxing or a show that you follow closely because the antihistamine did make me loopy so I wasn't really paying attn but still you want a distraction. Or you might find you just sleep - that's fine too!
taxol can cause severe allergic reactions. For the first few infusions you will be watched constantly for the first 15 minutes - like literally someone will be watching you.
taxol can cause bone and muscle pain and fatigue. Depending on the severity, it can be treated with meds or it might require a dose reduction
it can cause low neutrophils. You might need grastofil / neulasta shots. Here they teach you to self administer them - small needle in the stomach fat. easy peasy.
I hope it all goes well for you. Do you know when you start?0 -
Hi Moth, are you on weekly Taxol? My neutrophils have been below 1.0 (ANC) for 2 weeks now, so chemo canceled two times. I have only had 2 infusions so far.
I asked my MO about Neulasta, but she said not for weekly Taxol. Something about needing 3 weeks without tx.
Can you advise me exactly how you ice hands and feet? I use ice booties and mittens, but the fingers and toes are not totally covered..
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Hi Moth,
Thank you so very much for your reply, it is extremely helpful! I just found out about the treatment change late last week, so my MO sent me home to digest it over the weekend. I am hoping to find out either today or tomorrow when I will start everything. Since I have awful veins, I have requested a power port to be put in - don’t know how long I have to wait after the port is put in before I would be able to start -don’t know if I will be put to sleep when the port is put in, I don’t know much right now....tryto gather as much info as possible to prepare.....
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You can use a port right after insertion so no need to delay
Sandibeach, I was on taxol 3 weeks on/1 week off from March 2020-Nov2020. My treatment was on Thursdays. I used grastofil Sunday, Monday, Tuesday, labs on Wednesday.
In November I switched to abraxane which is not as bad on my neutrophils. Still icing.
I will try to take some pictures of how I ice.
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so i use the same size packs for hands and feet. I calculated how many I need based in switching every 30 min during taxol and bring it all in my own cooler with extra hard type ice packs inside. Fold in half and secure to feet. I use a cut off sock from dh's old socks to hold it on my feet while I wrestle on his old wooly hiking socks on top for insulation. I wear very thin socks under.
For hands I use the little thin protective fabric baggy the ice packs came in so it's not directly against my skin. Wrap with elastic and shove my fingertips inside. I used to put the whole thing inside oven mitts when dh could come to chemo with me and help but now that covid means I go alone, I skip that. It was too hard to do alone and I couldn't set up my iPad etc so I just swap the hand packs more frequently so they're always very cold.
I focus on toes and balls of feet & for hands up to 2nd knuckle. I'm usually in pain from the cold ar least once during treatment and need to take out my hands and feet for a quick break
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Waiting for tumor marker results which usually take a few days longer to show up on My Chart. Liver panel still good. Kidneys not so happy but not really dreadful as they bounce around.
Icing has helped somewhat. I bought the socks and gel pack inserts on Amazon and some extra inserts. I freeze them overnight and pack in an insulated cooler bag. I struggle getting the socks on and usually put them on during the wait between premeds and Taxol infusion. Be sure to take a bathroom break before icing. My infusion only takes an hour. After nurse takes vitals and flushes port, off I go. My husband drives me home as the Benadryl is still making me sleepy and lasts through the night. Steroids kick in the next day and usually keep me pumped for 24 hours. Then comes the crash and gradual return to just plain tired.
Side effects for me have been hair loss, some worsening of neuropathy, which I already had from prior chemo. Not bad enough to stop Taxol. Add fatigue, red face day after treatment which is gone the next day. No nausea or mouth sores.
I can't explain the differences in approach in the cancer treatment practices. Oh, the port placement. My power port was inserted by an Interventional Radiologist. Semi conscious throughout and very comfortable during procedure. Started treatment two days later. Wishing you the best as you begin treatment. Allergic reactions do happen and blood counts are affected more for some than others. From what I have read, many people have no major issues. Here's hoping you tolerate treatment well and, above all, that Taxol works on your cancer.
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Moth & Teedoff,
You lovely ladies are a wealth of information- your posts are very helpful! Thank you so very much!
Just got off the phone with the doctors office, they’re working on the insurance. Once that is all said and done, I’ll get my port and then start my new treatment. Again, thank you
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So, I had my first treatment of Keytruda & Abraxane yesterday. And, I was due for Zometa, so that was thrown in. I was supposed to have taxol with the keytruda, but my MO decided to switch to abraxane. They squeezed me in, so I didn't eat all day, got home and had a bowl of cereal and yogurt and went to bed. This morning, little aching and liquid diarrhea -ugh! Imodium is already a friend of mine (I have IBS), took one and here's hoping it works!
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Moth! Great icing ideas..that was very, very nice of you to take time to photograph and send to everyone. I am using those hints.
I also using Paxman scalp cooling to save hair. My girlfriends gave me $1000 towards the purchase of cap. I did lose about 75% of hair. Will cut it short soon and use Toppick until there is regrowth..apparently hair grows quickly when icing scalp. We will see!
Looks like 2 weeks on, 2 weeks off for me. Neutrophils not growing fast. MO still wants no neupogen, said it was like a band aid and there is hope I will stay on Taxol for a bit. Finished treatments 3 and 4, Benadryl only..no steroid.
The Cancer Center provided from amazing donation support, a free wig. It is Rene of Paris, long, center part and my hair color. Funny..most of my dark hair fell out, leaving mostly gray.
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Just checking in to see how everyone is doing. Glad to hear you are getting treatment details sorted out and up and running. After 9 months of 3wks on 1wk off, I'm kinda worn out. Neuropathy staying fairly stable but feet are definitely numb. Mornings not too bad but need Lyrica at bedtime to quiet the tingles. It's definitely been worth it as tumor markers almost normal. I hope that scans next week show either stable or improvement. I will always be happy for the gift of time. Here's hoping you have good results as well
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I'm off to gemzar. Thanks to all of you who posted tips and tricks.You're the best.
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Teedoff- Great news about your tumor markers! Good luck this week with scans. Hoping your tumor markers are an indication and you have great results!
Zillsnot4me- good luck on your next line of treatment, hoping you get great results from it!
Sandibeach - good luck with the cold cap, what a blessing your friends are! I read an article about dark chocolate helping to raise neutrophils. Has to be at least 90% Cocoa. It’s very bitter, I eat it daily, one that it is in low in sugar- 2g, and, for me, it has helped
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Thanks for your good wishes. Fingers crossed for scans tomorrow. First stop is oncology office to get port accessed, then off to hospital for scans. Techs love not having to find a good vein for IV. Will let you know how it goes. My new favorite quote is from Ted Lasso. “Living in the moment is a gift — That's why they call it the present."
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Teedoff, good luck tomorrow. TM markers have been a good indicator for me in the past. I have terrible veins but since having a port fitted, they use that for scans as well as blood tests and chemo.
Abraxane [ moved from Taxol because of severe allergic reaction] is working slowly shrinking most of my tumuors and nothing new, but the cumulative side effects of fatigue and neuropathy are taking their toll after 8 months. On the advice of my oncologist I have decided to go from 3 weeks on and one week off, to 1 and 1 with the assurance that I can go back to more frequent treatments or as the oncologist said 'there are other drugs we can use' if there is progression at the next scan in 3 months time.
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Denny10 - Fantastic news that Abraxane is working for you! Sorry about the fatigue and neuropathy. Glad to hear that your oncologist is switching up your schedule to help ease those side effects. I have just started Abraxane with the addition of keytruda. I'm two weeks on and one week off. As Moth and Teedoff suggested, I'm icing religiously, hoping that it will help with neuropathy.
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Results of bone scan and ct scan just showed up on line. Nothing new is good news. Still stable and no progression. Just wish I had more energy, a lot more hair, and feet that work. Sigh! I guess this is it for the time being. Forgive me for a few selfish moments as I know things could be much worse. I try to think of it as being on a slow train rather than an express. Okay, pity party over.
Glad my fellow taxane ladies are getting good results and tolerating side effects.
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Teedoff - What great news on your scans! Nothing new, stable and no progression, what wonderful words to see/hear! No forgiveness needed - in some form or another, we have to deal with physical and emotional issues. We are allowed to have our pity parties! May all our trains keep a rollin’ all night long....And for a long, long time!
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Sunshine and Denny, thank you for your good thoughts. I appreciate hearing from my fellow travelers. It's a real emotional lift! I see my onc next week and will try to “negotiate" a more manageable schedule. I hope we remain on this thread for a long time before moving on to the next cocktail.
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After six months on Xeloda (kind of, I had to take a break to get my coronavirus vaccines), my scan results were mixed: stable everywhere but the lungs, but there a new growths on the lungs and the previously identified nodules there are larger. I'll be starting weekly Taxol this month. I've read this entire thread in preparation, and purchased some cold socks and lined backpack with a cooler section. Having trouble finding soft chemo hats. I ordered two different kinds on Amazon, but they were billed as bamboo, and delivered as polyester, so I sent them back. This will be my first experience with hair loss. I made an appointment to get my hair cut short.
As always when I have to change treatments, I wonder if it's going to be worth it.
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