Weekly Taxol for Stage 4
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Lori, several side effects seem to be fading in the absence of dex.
I was having fairly marked taste changes and food aversion. At times I could only eat apples and bland carbs (ie baked potatoes and grilled cheese sandwiches), and even those did not taste right nor remotely good. I felt queasy sometimes. I assumed all that was attributable to Taxol, but it's been a month since my last dex dose and I have had none of these issues since we stopped it.
I also had puffy steroid face, particularly around the eyes. I noticed yesterday that my eyelid crease is returning. I developed perioral dermatitis, a horrid bumpy/scaly rash around the mouth and nose which can be caused by steroids. That is slowly fading also, though that is just going to take some time to resolve.
My immune system has gotten worse and worse this past 15 months. I was sick with one thing then another all winter. Steroids are known to knock down immune function so I'm sure the weekly dex wasn't helping here.
Counter-intuitively, I feel like I have more energy without the steroids, or at least my energy is more steady. Yeah, I don't have the crackhead Tuesdays now, but then again I don't have the awful Wednesday crash day, either. It's really nice to be able to fall asleep without meds, too.
My theory is that my liver was overtaxed from processing so many meds for so long (I've been in treatment for 8 years now), so I think some of these SE's were from toxicity of a tired liver. I have MTHFR which interferes with my system's ability to metabolize many meds. I feel less toxic and more like myself now that we have dialed the IV Benadryl back by half and eliminated the dexamethasone. May not work this way for everybody, but that's what my body is telling me.
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Wow lulubee you certainly did get hit hard with the SEs. I know how hard it can be to pinpoint the cause, and I'm glad to hear that they are clearing up and I hope your immune system improves too. I did have some facial puffiness that I'm glad is clearing up. I think that our body often tolerates things up to a certain point and then says No More! That's exactly what happened to me with the Taxol, so I'm taking a break from it for now (and hope I don't regret it later). After 8 years I can imagine that your body/liver is overtaxed from processing all the meds. I'm only 7 months into this and tired of it already.
Good that you could dial back the benadryl too. I hate taking more of anything than actually needed. Was just looking at one of my order sheets from right after I first started on weekly Taxol and see that they reduced my benadryl dosage to half (from 50mg to 25mg) and put me on only a very small dosage of dex (8mg) after a hypersensitivity reaction (that I wasn't even aware of) to larger doses of prednisone (125mg) and hydrocortisone (100mg).
Hope you continue to have good improvement with SEs.
Lori
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By the end of this month, I will hit my 50th Taxol infusion in 17 months!
My CT report and my tumor markers both came back stable today. WHEW. I don't know why I was so nervous this time. I wear myself out sometimes trying to get braced for bad news!
It's been about 5-6 weeks now since I stopped steroids. My perioral dermatitis rash continues to heal but it's slow going. I've had more energy than usual since chemo this morning, which is making me wonder if the nurse slipped up and gave the dex to me again by mistake. I guess we'll see come 2AM. LOL.
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lulu. Congrats on stable. Yea !
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Thanks, Patty! What TX are you on these days?
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I have only had 2 taxol tx weekly. Herceptin and perjeta every 3 weeks. New biopsy showed change to her2 positive
Do you find the taxol easy ?
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Just letting y'all know I'm moving on from weekly Taxol after 20 months. I have new bone lesions and the old ones are waking up, too. Progression is always scary and so sad, but we simply have to keep taking the next step, don't we?
I'll keep this thread in my favorites for a while in case I can help anybody get through treatment with Taxol.
Not sure what I'll be taking next. My onc has offered Halaven OR Abemaciclib + Arimidex. I have to decide over the weekend. If anyone has taken either or both, I'm surely interested in your thoughts.
I'm always on the Bone Mets thread no matter where else I may roam on the boards from time to time. God bless us, every one.
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Wow...twenty months of Taxol. I'm very sorry to hear about your progression. Sounds like you’ve got some sound options to consider
I've been whining that I'm finding Taxol #16 (5 months) hard to do.... I'm feeling like I need a break in order to continue on. How many chemo holidays did you take? Did you do anything to support your bone marrow, avoid anemia? I’m icing my hands and feet to hold back the neuropathy, did you do that work and did it work?
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Before I leave Taxol, I will share all the pointers I can think of so other people can hopefully benefit from my long experience.
Neuropathy--
I iced my hands and feet from the beginning. At first I used gallon baggies of crushed ice, and then I bought the gel mitts (Elastogel, I think) and light blue sock thingies with slip-in gel packs (from Amazon). I packed them in a small cooler with lots of blue ice.
After 8 months, I rather suddenly developed neuropathy and we were concerned that it was ascending, so I was granted a 20% dose reduction and took a week off treatment to give my hands and feet a break. The neuropathy eased to a point I could live with and I resumed the regular treatment schedule at the reduced dose.
I tried taking gabapentin for the neuropathy but it did NOT agree with me. I felt really wonky and awful on it. Then I googled to learn about its side effects, totally freaked out when I learned that its cognitive damage can be permanent, and I refuse to ever take it again. Since then I've been taking the amino acid GABA with my onc's full support, and I do believe it has helped prevent further damage. The kind I take is GABA Calm lozenges by Source Naturals, 2 at bedtime and on the morning of my infusions. Again, Amazon. It has the added benefit of easing stress and anxiety and helping you feel calm without feeling druggy or off-kilter.
I have also used as needed a cream called Penetrex (awful name, right?) which is primarily marketed to diabetes patients for neuropathy, I think. I applied it to my hands and feet at night.
Pre-meds problems--
I had metal mouth and some food aversion for many months. After a year, I begged my onc to drop the dexamethasone pre-med because I did not think it was wise to stay on steroids (even low dose) that long, and because I was SO DONE with the awful insomnia and the weekly steroid crash. Interesting thing happened. The metal mouth and food aversions disappeared, and I felt about 50% better all the time. No more dex for me, ever, if I can help it!
I also asked to have my Benadryl (diphenhydramine) pre-med cut in half after several months because I was tired of being totally worthless one whole day a week. That half-dose reduction helped tremendously, also. I never had any sort of reaction.
Nutrition and hydration--
I avoided grapefruit, green tea, St. John's Wort, and resveratrol, on the advice of the oncology pharmacist. I ate a steak once a week, usually right before labs, and usually had a high quality cheeseburger every week or two, and I do believe eating quality beef a couple of times per week helped support my blood counts. This part is controversial: I also ate raw oysters during my week off chemo, with my onc's approval, because I believe the extreme zinc bath you get from oysters (the highest food-based source of bio-available zinc there is, by a long shot) was super good for my WBC. Your mileage may vary, and of course you should always check with your oncologist before eating raw stuff. I was shocked my onc agreed to this! Do note that I only ate them at a very reputable oyster company, topped with loads of cocktail sauce made by my son with heavy Tabasco and horseradish, to kill off any rogue pathogens (Tabasco is legendary for killing bad gut bugs). My white cells are always a bit low but they hung in there like champs, considering. I was careful where I ate raw salads; a couple of fastidious salad cafes seemed careful enough to be okay, but I rarely at salad in a restaurant with a lot of meat prep going on in the back.
I supplemented during my off-weeks with calcium, magnesium, trace minerals, B complex, Vit D, and a multi-vitamin. I took a good probiotic regularly. I added Alkalime powder to my water whenever my stomach felt off.
I always knew to anticipate some diarrhea on days 3&4. On those days, I usually ate a banana in the morning and at dinner a big grilled cheese sandwich (sharp cheddar on sourdough) to slow the Big D roll a bit, and it did help. Just in case, I always wore a maxi pad and carried a small package of baby wipes, which proved to be a good thing on a few occasions. I never took anything to stop this GI process because I felt like I needed to let my body detox out the Taxol.
I was told to eat all during infusions and hydrate like crazy before, during, and after infusions. I got tired of trying to eat with cold mitts on so I stopped eating during infusions and nothing bad happened. I did learn to go easy on coffee on infusion day and guzzle water and coconut water instead. I also requested the big bag of IV fluids every infusion; otherwise they would always give me a small one if I didn't ask. Do this if you can because it really helps.
In 20 months, I only missed two infusions. Once because of neuropathy escalating, and the other time for a family trip to Scotland.
Annnnd I think that's all, folks. All the best to all of you. Taxol was pretty good to me, all things considered.
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Thanks for your helpful advice lulubee. I'm sitting here tonight on a steroid high and that's after negotiating premeds down by half. I will push harder at getting rid of the steroid and keeping the benedryl at the new cancer Center that i'm Moving to in Sept. They may be more progressive. I absolutely agree that taking other drugs to manage symptoms doesn't always work and in fact makes it worse for side effects. I saw that with Metonia prescribed to keep food moving in my gut. I will look for the amino acid and probiotic. Lol, I eat during infusion too, my go to is cheesies with ginger ale. Nothing nutritious but boy it tastes good. Steak for sure once a week, beef burgers too....raw oysters not so much. I appreciate your comment to watch the raw salad in restaurant, I hadn't thought of that. If I have other questions, I'll find you on the bone mets thread or pm you. Be well
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Joining. It’s been 7 years and now I’m circling back. Glad this group is here as I have forgotten a lot since the last time I was in this drug. Xeloda worked wonders for 5+ years. Now I’m back here again.
Thanks ladies
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I think I am landing here for now. I hope I'm in the right place. Hard to figure out where one belongs sometimes. hmmm so my story changed quite dramatically over the past two months. I was on a clinical trial that apparently let my bone mets run amock but shrunk my liver mets. The bone mets were very painful so I could not continue with the trial AKT 1 mutation protocol. I have multiple rib fractures, compression fractures, broken clavicle. Very painful. Lots of pain management and interventional procedures (radiation, kyphoplasties). Finally have the pain under control on Methadone and decadron rather than Oxicontin/dilaudid. Little to no need of break through pain management with dilaudid. That just made me loopy with pain. Not good. Feeling better now but don't know much about paclitaxel (taxol). Didn't think I'd need IV chemo so soon. But I am happy to be feeling better.
I've had 2 rounds of taxol with no side effects so far. I go for the 3rd infusion this coming Friday and then next week is a break. The literature indicates I will most likely lose my hair which I have now come to terms with. Wig shopping next week:)
So here I am..
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I’m with you animal crackers. First dose is Wednesday. Tomorrow is my echocardiogram for baseline heart function as I will also have Herceptin and perjeta.
Hoping for the best. Haven’t been in this type of chemo since 2012
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Hi everyone, my mom is joining back weekly Taxol starting next week. She had progression while she was off Taxol for about 8 months. During the 8 months, she only did Herceptin once every 3 weeks and was on Letrozole. Taxol wasn't that easy for her, she had her good and bad days. The doctor said he will be giving her a lower dosage than the last time, so hopefully it's more manageable.
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I fusion #2 today. Preload steroids are killing my sleep cycle.
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Just yesterday had my 3rd dose of my 1st cycle of Taxol. Full dose each week, next week off as scheduled. Blood counts started off high normal for me and ended with an ANC of 1100. Premeds as follows:
Dose 1 Pepcid 50mg Benadryl 25 mg Dexamethazone 15mg
Dose 2 Pepcid 50mg Benadryl 12mg Dex 8mg
Dose 3 Pepcid 50mg Benadryl 0mg Dex 4mg
I want to get all premeds to zero if possible. First week was so hard with messed up sleep, back pain, aches, overall bad. Second week was much improved but got really bad acne/folliculitis. Also 4 pounds of water weight in a week. Third week I’m feeling great so far but my hair started coming out in big handfuls this morning. Water weight came off.
Overall I’m encouraged that it’s getting easier right now and hopefully working. No tumor markers since we started so no clues yet. Scans in December.
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Since my liver mets are in full evolution party mode and weren't interested in taking off the party hats and turning down the music even after the cops were called, I was just accepted into a Phase1b clinical trial that will combine Taxol at 80 mg/m2 in repeated 28-day cycles with a new targeted therapy. I have a couple of types of mutations in my liver tumors and the targeted therapy, an an oral, small-molecule protein kinase inhibitor called Rebastinib, is geared towards suppressing one of them. I'll start treatment the second week of November. I was worried that I would feel like a lab rat, but the onc couldn't have been warmer or more welcoming. He explained things well and listened well, so I think I'm in good hands.
This will be the third time I've had IV chemo in the past three years, so I'm an old hand at that, but I've already gotten some great pointers about managing Taxol from this thread. I AM concerned about the neuropathy, which the doctor highlighted as a common SE.
Hey! Ho! Here I go.
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Kathysmith, that sounds like a very worthwhile trial. Best wishes! 80mg/m2 is a little reduced from the standard start of 90 so maybe that will help with the neuropathy. After my first cycle, I don’t have any yet.
On this first week off, I’m finding myself so tired. I wish I could do nothing but sleep for days but I have an active life. My body feels like it is two days behind everything and trying to catch up.
Hair loss for me ( for the thread record): Day 16-18 of cycle one with treatment day 1,7, and 14 Then shaved it. Letting it fall out in hopes of keeping some was very distressing and I highly recommend not doing that. I would do a preemptive strike like I did the first time.
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Larkin, this will be my third time to lose my hair. It has just come back in from the last time, so there's not much to lose! It's still super short, which I love. The last time, I buzzed it to about 1/2" the minute it started falling out and I'll probably do that again!
Katty
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Thanks for your humor. I find that my healthy cancerless friends don't always see mine. Good luck on the trial. I'm just going to start Taxol (I think) again. My cecum cells were unimpressed with Faslodex, Verzineo, or Xeloda over the last year. And I loved Xeloda. So I'll be reading the posts religously from the Taxol.
Karen
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How are all the ladies taking Taxol doing? AnimalCracker, Kattysmith, leftfootforward?
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sitting in the chair now as I read this.
I find I’m ok with the taxol but I do have fatigue. Now this could be because I’m currently working fiulkbtime ( through Jan) and have 4 kids plus the treatment. Weekends I need to rest. My sleep schedule is also screwed up with steroids the day before treatment and the day of treatment.
My diarrhea is bad but immidium helps. I Keto it with me at all times.
But I’m doing ok. Brain MRI tomorrow. I assume I’ll have a CT in December to see how taxol is working.
How are the rest of you!
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Hi everyone!
Well after s year, it’s progression and onto the next thing - Navelbine. I hope you guys continue to do well on Taxol. I will check in from time to time and see how you are. Lots of love xxxc
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Rejoining this thread since I'm back on Taxol again, but I'm on a 3-week dose along with H&P, not weekly. My IBC is acting up again with a vengeance. Reconfirmed with new biopsies that it's still strongly HER2+ but the H&P alone isn't touching it although it's been doing a great job resolving most of my distant mets, but now I also have new lymph node involvement throughout my abdomen in addition to skin and chest wall involvement again from the IBC. It's starting to get pretty painful so I'm hoping the Taxol kicks it in the butt fast and starts giving me some relief. Scared of losing use of my arm again if it doesn't respond to the Taxol.
Last time I started having a severe reaction after 3 months that got worse with each successive infusion, but it worked so amazing well that we decided it was worth the risk to try it again with the promise that they'd take me right off it if I started having the same problems again. They slowed the infusion down to 90 minutes this time, made for a long day with pre-meds, flushes, and Herceptin & Perjeta at 60 minutes each. I'm still a bit nervous because I spent 3 months in hell before I came off the Taxol last time. Weird how I tolerated it so well for a few months, and then all of sudden my body said "Enough". Just have to see how it goes this time.
My hair had finally grown in long enough that it was time to consider paying for a real haircut haha! Guess I can save that money, although last time I didn't start losing my hair until two months into Taxol. I may just take the scissors to it myself and cut it super short.
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Well here I am with this being my first post on this thread. It made me feel good that I recognized a familiar name as I scrolled through some of the more recent posts. Pots, here we are together and I really enjoyed our first meeting last week. For the rest of you, my metastasis is a tumour entangled around the neurovascular bundle of the brachial plexus on the right side. It was very likely a sleeper node left after all my treatment in 2012 and 13. My breast surgeon at the beginning in 2012 called it a constellation of cancers. Anyway at the five-year mark it came back. I would love to know someone who has a similar metastasis. Even though it is local regional it has been a really hard go. I have excruciating pain radiating down my arm into my hand and I have absolutely no use in my right hand. Enough of that, I qualified for Ibrance and Faslodex and got a year out of that. I started Capecitabine in August and managed 4 cycles before hand/foot syndrome got me. Even at my senior age of 69 I had been very active up until the metastasis. In May 2017, I led a high altitude trek in Nepal. If anyone is interested, just above my stats there is a link for my blog and there is a lot about my trek/breast cancer life. Anyway, the foot syndrome park simply made it impossible for me to be active. My oncologist understands and says that we can keep the Capecitibine in the back pocket and try Paclitaxel weekly. Any advice or information is welcome and I know many of you have much experience, including you Pots.
Marian
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Marian my original tumor got entangled in the brachial nerves of my right arm and I lost complete use of my arm for a couple months. The pain was horrible and I can truly sympathize with what you are going through. The hospital told me to use ice and keep it elevated because I had a lot of swelling and that didn't help much, so my MO told me to try heat therapy and I got good relief with that. I would spend a couple hours every day with a heating pad tucked under my arm. I too led a very active lifestyle, and I couldn't even type on my phone at the time. It was very hard on me emotionally. I was put on fentanyl and morphine at the time, but I can't really say how much of the pain was from the nerve involvement and how much was from ulcerated skin mets. I had an almost immediate response to taxol and regained full use of my arm within a couple months.
Here I am once again dealing with it after only a few months, scared to death it's going to get back into the nerves and I'm going to lose use of my arm again because it's growing very fast. I have stubborn IBC so there's skin involvement again too, which really increases the pain level because even wearing just a soft t-shirt hurts like hell right now. Just using ibuprofen for the pain this time, I want to put off going back on opioids for as long as possible and I'm hopeful that chemo will take care of the pain...any day now. Have already lost some mobility in my arm again, so I'm hoping this round of taxol starts working quickly before it gets worse. I'm on a 3-week dose this time instead of weekly.
Sending you a virtual one-armed hug, and I hope you have as good of a response to Taxol as I did the first time.
Lori
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Hi lovelies can someone has experienced lower abdominal pain ever on taxol... Cycle 2... Mild pains like having in periods??? If yes what's the solution plz
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I’m not exactly doing weekly taxol but get dose dense once every 3 weeks, but a few days after infusion i have experiencedthe same mild lower abdominal pain, very mild not enough pain to need Advil or anything. For me they lasted one to two days and then were gone. Sorry I don’t have a solution, but I’m glad they went away quickly for me.
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Like pboi said, mild but not enough that I've needed to take anything for it. If your pain is worse, two questions I would ask - where are your mets because this is my 2nd time on Taxol and it does seem to cause tumor flare pain for me, and are you having any problems with constipation or diarrhea? Early constipation pain reminds me of mild period pain. If you have even the slightest sign that you might be heading toward constipation, make sure you get on top of it fast. I never again want to go through what I experienced the first time, hoping the Perjeta balances it out this time but I'm keeping a very close watch on things. Strange thing for me is that over four months I went from severe constipation to severe uncontrollable diarrhea on Taxol. It can definitely mess with your GI system.
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LoriCa, thanks for writing back to me and I so much hope that your tumor does not get back into that brachial plexus. Was your hand also involved with the exceptional pain and no use? The pain and loss of Independence it being my right-hand has been pretty tough. The eight sessions of palliative radiation 16 months ago did very little and nothing at all for my arm and hand. I have been all over the map on different drugs and for pain it was the oxy's first. I went into the Victoria hospice for two weeks in June for pain management trying first a Lidocaine drip while going down on my oxy's. There was no real benefit and I was started on methadone there and I'm still on at along with hydromorphone for break-through. I had my first stellate ganglion nerve block in August, another one in early October and the third one yesterday. They do help but ideally they need to be done every three weeks and there is no way I can have that done because there's only one doctor doing them and he is also an anesthetist. With lack of circulation also in my hand, it is either on my body somewhere keeping warmer or with the heating pad for with one of those gel packs that can go in the microwave. I got one year out of Ibrance and as above the Capecitibine. I know it is entirely possible that I will get worse feet problems but I still want to give it ago. Tomorrow at 08 30 is my start and I had a great class yesterday.
Pots is giving me a hand with advice too.
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