I did the Genomic testing and thought the drug they put me on would be a miracle, well not true. After being on Gemzar every three weeks on one off. My oncologist said it was not working. My markers went from around 780 to 3,800
So I am not lucky.
Taxol did bring markers down to the 700's but side effects were bad.
I just started Abraxane last week. First two days were ok third day muscle and bone pain set in. My legs swelled up so bad I could not walk. Was a little better.
Anyone try abraxane?. Seems like the only time I feel good is when I am not on any treatment or one that is not working.
Well I hope you are taking care of yourselves during this pandemic. Let's hope it is over soon and we can see our children and grandchildren.🤗
Barbara
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Jerseygirl45
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Hi Barbara; Thanks for your reply to my other message. I do find that Abraxane side effects hit on the 3rd-6th days after treatment. I have it two weeks in a row with a week off...how often are you getting it? And I think my dosage is 80 whatevers, that may be on the low side because I don't tolerate higher doses well. Do you know what yours is?
I had the bone / muscle pain after the IV 2 weeks ago, but I also had my Xgeva bone shot the same day so it might have been due to that. Didn't have pain after the 2nd week IV last Thursday but the fatigue hit me like a ton of bricks on Saturday. Thankfully it lifted yesterday and my energy is pretty good today, except for the funky mouth coating and needles in my toes. I haven't had issues with leg swelling.
I did a lot of research on Taxol vs Abraxane before I started and it seems that side effects should be better on Abraxane. I hope you find that they settle down. What do you take for the muscle and bone pain?
This will be my second treatment. 100mg over a half hour. I go on Thursday and the side effects started on Sat very bad. Took a bite of marijuana candy. It took the edge off. The next night I took again. Then I felt a little better on tues. will ask for a water pill for the swelling in legs tomorrow.
I just hope this will lower my markers. They are so high.
Our reaction times sound very similar! I get IV on Thursday too and it's worst Sat-Tues. I get 80mg. I hope your results are similar too; my CA15-3 dropped almost 200 pts the first month; hope yours drop even more. I haven't been able to have it 3 weeks in a row because my neutrophils got too low...0.6. I'm doing mistletoe injections now that seem to help with the white blood counts. And thanks for the reminder...I have some CBD/THC gummies that'd I'd forgotten about!
One more thing...my naturopathic oncologist suggests 10mg/3x day of L-Glutamine on the second and third days after chemo to help prevent neuropathy. Have you tried that? It's a powder that dissolves in water, pretty tasteless...I also mix it into yogurt sometime.
Will be thinking of you also as we go through this journey. Let's hope we the meds works and we get to stay on it awhile. So we can relax and stop worrying about markers and will they have a new chemo drug for us. My doctor said I am done with pills it will always be a chemo drug from now on.
Barbara
Hi Barbara,
I'm glad Patty responded with some great insight, especially because I don't have any! Just wanted to say that I'm sorry you're having issues with your treatment and I'm hopeful that it will work well for you..
Take care! Stay well and safe up there in Jersey (oh, how I miss Jersey these days!),
Yes she pretty much had the same side effects. Maybe they will stop in a few weeks? As long as they lower the markers.re staying safe. I miss my hiss and grand kids.
Barbara
Hope you a
Hi Barbara
I’m sorry to hear you are having such a tough time with side effects. It makes this condition so much harder to cope with.
I hope it all settles down for you and your markers start behaving themselves.
Hi Barbara, sorry you’re going through these symptoms. I don’t know the drugs but that is interesting that you had the testing and the drug they suggested did not work. Which genomic testing was that?
Also, are you sure the swelling legs are from the drug? I’m only asking because if , for some reason, you had lymphedema set in I know that water pills are bad for lymphedema. So just have a think about if that is a possibility or not. Might be good to look up a lymphedema specialist now as a back up for a quick call if that is a possibility.
Hope you feel better soon!
Oh, ignore my genomics test query, I just saw you had the same as me right after I wrote this. Ugh, that’s disappointing to hear that the test didn’t give better results.
Hi Barbara, I am so sorry that your numbers are so high right now. I, too, had the genetic testing and what they said would work didn't. I am on Gemzar right now, but it is not working either. My doc is thinking about me going on what you're now on. I really hope your numbers go down!! Hang in there and know that you are not alone. I hope you get results and find some peace and comfort very soon!
Hi Mary thank you, I hope it brings my markers down. Don't mind the side effects if it gets those numbers down. I guess we are all strong for what we will put up with just to get this steady. I like when they say no change, better than progression.
I just finished 3 months of Abraxane- weekly- I tolerated the drug fine except for hair loss- unfortunately it did not work for me. Markers dropped at first but than went back up. Did 2 cycles of Doxil - markers up and progression- Horrible mouth sores from Doxil- wishing you success in finding the perfect treatment plan
Sorry about that I know just how you feel. It is like we are on a roller coaster. Coasting along on meds markers up we change meds they go down we are happy for a few months. They go up again we think there is nothing out there and then they come up with one. You coast along three months did it work start over. This is our life now passing the months trying to find something that will work for a year at least.
I Guess we should get used , side effects, markers and see how long we can go.
Barbara, so sorry you are going through this! You would think that with the genomic testing it would have worked! Hopefully the will find something without so many side effects.
Hi Barbara! I just wanted to check in and see how you are doing. If you are still on Abraxane I hope the side effects have settled down and you can enjoy the summer. Enjoy, and stay safe!
I am off abraxane because of the side effects. I was in hospital for two weeks with dehydration fever mouth sores. WBC went down to zero. It has been five weeks since last treatment and I can still not walk straight by myself.
But it did bring my markers down from 4400 to 1000 andthe other from 3600 to 93. I had 6 treatments that's 2 months.. I was in the hospital in my town and my oncologist is in Newark. I met a nice oncologist in my town and decided to change doctors. Because I would be in my hospital and oncologist could never be reached. The new oncologist said she may use the Abraxane at a lower dose. Said she will find a med that does not cause me so many side effects. She ordered a pet scan and that also showed improvement.. she will decide but if I need hospital she will be right here. I am having a port put in next week also. So I liked my old oncologist but it will be better with my doctor close b y. I hope it all works out. Side effects seem to get me with all treatments maybe lower doses is the answer.
So happy for you. I thought once they found a mutation they would treat it with a matching drug, but I t watching my tumor markers guess not. I like not watching tumor markers anymore it takes my mind off of cancer. I’ll just wait for pet scan and hope for the best.
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