Weekly Taxol group
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Hello,
Glad everyone seems to be doing not so bad with SE’s. Hope it continues for all. Happy for those seeing hair also. The little things we wish for mean so much. I agree about the beanie that people notice. But it’s so much better than a darn hot wig. I bought 2 wig halo’s for like $105.00 and it’s great because it doesn’t have anything on top so it’s not as hot. Been using that with beanies and it’s confortable. I’ve been getting bold with going bald at home even when I go to the yard or to let the dogs out. Yes my neighbor said GM to me when she saw me glad going to my mailbox. She hesitated and then a yes as if all was normal. I can’t imagine what convo went on in her house. But I’m tired of hiding as if having BC is something I should be ashamed of .
JUst got back from my taxol, my 2 nieces took me after they asked to. It was a good day with them and they love me so. So letting people in instead of pushing them away is what I’ve been doing. So I feel very loved and blessed to have wonderful friends and a large family around.
3 more and then I’m done with chemo. Yippie can’t wait and then rest till surgery. One step at a time.
I miss work, but early retirement at 54 I guess is something I have to accept. Idk what I’m gonna do with all my free time. Netflix everyday no way. I’ll see, guess I’ll work on my new house so when kids come back from spending the summer with my ex it’ll feel like home again.
Sorry if I’m rambling but this is the only place I choose to do so. Adore you guys. Everyone be as well as you can and be the warriors we are. We do get to have down days, that’s allowed.
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I'm switching from Taxol to Abraxane tomorrow, after two reactions to the Taxol. My Taxol side effects have been very manageable -- I'm hoping the same is true with Abraxane!
1Stronglady, I didn't have any restrictions after getting my port. No pain or discomfort, but it did itch on and off for the first few weeks. I hope it goes well for you!
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I did not have any lifting, exercise etc. restrictions with my port. I just got it out, and was told not to lift anything heavier than 10 lbs for a week while it heals. Same thing probably when it went in, but I don’t remember.
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1stronglady - my recollection of the port was only a brief period of light lifting. I walked my dog but as a city girl, I don't know what you are doing with the larger animals which might be restricted. I was back on the golf course in less than a week both going in and out though.
Although a friend had given me all her wigs, I never wore them. Always went bald at home but the sun in AZ isn't conducive to that outside. I was actually more comfortable with no hair than with a little. Took me 6 months to give up the scarves after the last taxol. From the beginning, I was very public about my diagnosis but I am at the age that most of us have "something." The support I got was fantastic and I think really made a difference in my journey. I also got several friends to get a long delayed mammogram.
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I had my 8th taxol today but it had to be reduced dose because my neutrophils are still tanking. On the plus side, the lower dose will be good for keeping any neuropathy at bay so there's that!
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I was diagnosed with stage 4 triple negative Breast cancer. My oncologist at Rush in Chicago, wants to help me live the best quality of life. Since I’m a single mom and only 43, she feels shrinking the cancer with a single drug, Taxol. She feels it will be effective, where Other oncologists want to use two or three drugs on me. I just started Taxol today.
Cancer is in 3 mass clusters in each organ; my right breast 10cm, liver 7 cm and lungs. Any feedback in treatment? Is this aggressive enough? Praying for us all, relentlessly!
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ChefMelanie - I think you may also want to ask this on the Stage IV forum because as I understand it, protocols for Stage IV are different due to trying to avoid resistance. That's why I think some MOs prefer not to do combination drugs because then if there's resistance, you have fewer things to switch to. This way, if you get resistance to taxol you'll just take that one off the table and move on to the next thing.
But again, I think your stage IV pals will have the most experienced views and understanding of this & will be able to share their experiences with you.best wishes
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Hi all, I was switched to abraxane because of severe muscular and joint pain, it helped enormously. I do still have day 3 after the infusion where the fatigue is the worst with generalized muscle aches but no comparison to the taxol. The only thing is my insurance would only approve the abraxane for a protocol of 3 weeks on, one week off. So I've had 2 taxols and 3 abraxanes now and next week I will skip my chemo. Unfortunately this will extend the treatment and I will be finishing at the end of August instead of the beginning. Hopefully having the one week off will help me regain some strength and energy as i am feeling pretty crummy overall now after AC, then taxol and abraxane. Luckily no major side effects, blood work is stable, no neuropathy yet and no damage to nails. I am taking L glutamine, Lcarnitene, B6, and B12. Staying positive and wishing everyone well.
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For Ingerp and all.....
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Egads I was waiting for this! After today I'm halfway done with T. :-) And my youngest (whose graduation we went to in May) is home now for a few days. He hasn't been here in two years (I guess that's what happens when you grow up in Virginia and go to school in Montana). He and his young lady just finished up five weeks in Europe and had an amazing trip. They're here until next Wednesday and I am loving having one of my kids home.
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Ingerp - sounds lovely having the kiddo home...even better than ice cream! Lucky pair, 5 weeks in Europe...I really need to start travelling again, it’s been far too long! So, 1/2 way there...look at you go! I’ve read you’ve been dealing pretty good so far with minimal SE...crossing my ice cream scoops that it stays that way! This week should be a breeze with family home...play it up enough and not only will you get the wonderful visit, but you could possibly get them to get the housework done!!
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Very good point, Egads! (And yes--I knock on every piece of wood in sight but I think SEs are even less noticeable than the first few weeks. I feel like my body is getting used to the premeds too--I don't seem to notice the steroid hardly at all.)
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ChefMelanie, I'm also stage iv just diagnosed in Jan. with similar dx as yours. I had only taxol for ten weeks but then went to Ibrance and letrozole. Are you her2 positive or negative? I can't think taxol alone will be enough but I'm certainly not a doctor! Please do post your questions on one o r more stage iv topics. There are so many people there who are very knowledgeable and experienced and happy to help.
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Ingerp - I used to crave the steroids. I was on a 2 week schedule back in the day and by the time my next approached I was exhausted. The Dex gave me a new lease in life for 4-5 days after. So happy to see the SEs are not taking a large toll on you!I was pretty much the same...well except for being somewhat bald and eating enough to feed a small 3rd world country. Hold it steady sister...you’re rockin’ it!
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Melanie...I am Stage IV with bone metastases. I initially started off with Ibrance/Letrozole combination. After 4 months, my red blood count and hemoglobin tanked. My onco did a bone marrow biopsy and sure enough there were cancer cells in my bone marrow -- thus the reason for my counts to tank. I was then put on Taxol. I had 15 rounds. My scans were markedly improved after the Taxol. I am now back to the Ibrance/Letrozole regimen. I wish you the best in your journey.
Hope
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If any of you are suffering the bleeding nose problems, someone on this board (but I can't remember which thread) recommended saline nasal *gel*. Has to be gel, not the spray. I've been using it 2 days now & it's made a huge difference.
I apply on q-tip at night and roll around inside one nostril, repeat with other end of q-tip and other nostril. It seems to be promoting moist wound healing overnight so that your nose doesn't dry and crust up over night.
I have seasonal allergies so I need to blow my nose throughout the day & I kept dislodging the scabs and getting a bloody nose. The gel has made a huge difference.1 -
I am mos def avoid looking at the scale when I get my weight check every week. I'm sure I'm up a bit. <nomnomnom>
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My weight is up about 6 pounds. I cringe every time I get on the scale. I crave the worst foods, but it's getting better week by week. I am trying to make myself get back to my normal eating patterns, but I feel like I was told to stay away from so many healthy things! 5 more. Then I'm free!!
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lg10--I have totally given myself permission to eat pretty much what I want through this. I didn't plan it that way--was eating fairly healthily going into this, and had even tightened that up a bit after dx. But I place this firmly in the "be kind to yourself" category. A few more weeks of treating yourself will not impact your long-term health, and will give you some pleasure as you get to the other side of tx. Life should be pleasant; life should be fun. Doing what gives you joy is a good thing. IMHO.
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I totally agree and have the same mentality. I had moved to a plant based diet when I was diagnosed and now I go for a burger after most of my chemo appointments. I have been anemic some weeks and that is my solution, ha. I will get back to where I was. I bought a book named "Anticancer: A new way of life" and it has some really valuable research (in my opinion) on how to nourish yourself with food and emotionally.
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There's a thread called Diet & Lifestyle where we're discussing changes - mostly evidence based stuff. https://community.breastcancer.org/forum/79/topics...
(it's a re-boot of a previous thread which got deleted when a poster had her account erased - so the beginning is a bit odd but then we started to recreate and repost the links and articles we had remembered gathering before).
I have gained weight on taxol too. I think it's the combo of steroids + no nausea (compared to AC). On AC I think the steroids & nausea cancelled each other out & I lost weight. But now there is 1-2 days each week where things almost taste good. Also, I'm more active so I'm hoping some of that gain is restoring muscle. I got pretty weak and deconditioned during AC.
I was so tired yesterday I needed a nap! (day 3 of taxol #8) I know my counts are really low so I was worried I was coming down with something but I never developed any symptoms or got a fever and this morning I feel much better so hopefully it was just a fatigue thing.
I did get in >7K steps on my fitbit in spite of napping for 1.5h and spending another couple hours relaxing on the couch with netflix so it was a good day overall.hugs everyone - stay strong, one foot in front of the other
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mLghtn, I’m being changed to Abraxane from Taxol on my 9/12 trmt, due to neuropathy pain in my mastectomy area. Curious of any other side effects you had other than fatigue with Abraxane? With Taxol i have neuropathy in hands, feet, legs, face, tongue and chest area(the worst pain) and usually crash on the 4th day with lots of naps...was so anxious to get this done! Now changing drugs makes me a little nervous, but I couldn’t take the pain anymore...hoping for no new side effects
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Calee65, I'm sorry you're having so much neuropathy, that sounds unbearable and scary! I only had 2 taxol and then 3 abraxane tx so far. I had some neuropathy in my right hand with the taxol but I've had it on and off prior to chemo as well, all I know is its gone since I stopped getting the taxol (I also had from my neck to my knees, terrible arthalgia and myalgia--needed percocet by noon everyday). Now I still have mild lower back pain and achy legs that seems to be muscular myalgia, nothing like the pain I experienced with the taxol. I also have little appetite and sensation like my tongue is burned the first few days after the infusion. The fatigue and weakness are whats worst and literally makes me not want to leave the house because I get winded and light headed very easily, makes me feel like I might pass out at times. Also I'm not getting any steroids with abraxane since its not part of the program and I feel like I'm missing that fake energy boost i got from them. My infusions are on Thursdays and my weakest achiest days are sunday and monday. I hope the abraxnane works better for you, its not supposed to cause as much neuropathy as taxol I was told. At least you are almost done and I was told not everyone can complete 12/12, 8/12 is good, hang in there...
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mLghtn, thanks for your reply. I guess everyone’s se are different. I know what you mean about the steroid..always liked having energy for a few days! Well it’s hot in Texas..so if I stay inside for the next month I can handle that! Hahaha. Good luck to you
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Calee...I had 15 Taxol infusions. I have horrible neuropathy, but only my feet. Mine was pretty mild, but got worse after my infusions -- I guess because Taxol is cumulative. I cannot walk on my own. I use a quad cane around the house. I am taking medication. I'm told it takes a long time. I've had improvement, but nowhere near being back to normal, and it's been over 3 months. I hope you get relief soon.
Hope
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- hi all. I see taxol is standing by its rep with the neuropathy. Nonahope I’m so sorry you can’t walk on your own. That’s just horrible. My onc told me that at Er the last taxol the SE for 3-6 months will get worse cause it starts working in those tubular cells that it attaches to. I pray that for you and everyone else, including me that there is no permanent damage. I have numbness in all my toes and when I walk it feels like I’m walking on pebbles and only feel where the pebble feelings are. Also my hands tingle and numb on me.
- I had my last THP today, 2 more taxols and I’m done with taxol and then will only have IV H and P every 3 weeks for 9 months. That in combination with surgery and radiation somewhere in between.
- Those ice creams look real good. I always hated sweets but with chemo I became a sweet junky and gained 16lbs. Freaked me out so last week I didn’t give into my cravings and today saw I lost 3lbs.
- Ingerp so happy for you, enjoy having your son home. Oh traveling through Europe what a blast. Best years of my life they were.
- Nose bleeds yes I got them. Last night while cooking I think the heat did something and blood was just steaming like crazy. So gross. I put Vaseline up my nostrils and use the liquid moisturizer. I think you’re correct that gel would be best.
- Ok well the poops have begun. 😳
- Good night all
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Nonahope, I’m sorry you’re still having neuropathy issues. It worried me mine would get worse so I’m hoping with Abraxane it will start to improve. Just not having a chemo trmt this week has helped some. I didn’t know Taxol chemo continues for 3-6 months after we finish..makes sense why so many get worse after they finish! I keep telling myself only 4 more treatments!!! But then read radiation can effect neuropathy...but don’t want to start worrying about that yet...
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I remember nonhope was doing so well and I kept following your posts and then suddenly your symptoms came within the last few taxols. That’s really scary that it just bang hits like that to such a serious experience extent where you can’t walk.
Hope, the usual prococol is 12 taxols. You I believe are the only one who was given 15. At least that’s what I remember from all the posts. You say there has been improvement which I’m praying that it will all disappear for you after this 3-6 months where at least I was told it will get worse. See it as it’s doibg it’s job. May God bless you with NED and no neuropathy. It’s all just so scary.
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idkidk...Thanks for your kind thoughts. Yes, I went through Taxol like a breeze. Until, the neuropathy hit. I have metastatic breast cancer (unlike you gals) and the Taxol regimen was because there were cancer cells in my bone marrow. I think my last Taxol was in March and I started oral chemo combo of Ibrance/Letrozole in April. I am taking medication for the neuropathy, but I know it takes time.
Hope
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I have dose 9 this afternoon. I had a flare up of neuropathy but just like last week, it appeared on Tuesday, but by Wed eve was not so bad and this morning I hardly notice it.
I had a diagnostic mammogram this morning on my right side (which hadn't been scanned since a regular mammo last June). The radiologist saw something she didn't like and wants me to have an ultrasound, scheduled for July 9. Ugh. Like I needed this stress.0
