I had bad pet ct results. In addition to bones, It spread to the liver ( 6 lesions) and lymph nodes in pancreas, possibly pancreas spread. I was on Xeloda. Today I was told that I have yo be switched to weekly abraxane infusions. It was my biggest fear. Please please share your experience if you are on this treatment. Thank you so much
Marina
Oh, Marina, I'm so sorry about the progression and change to infusions! I don't have any relevant experience, but am hopeful that someone with experience will have some encouraging news for you!
Take care,
Lynn
Thank you so much Lynn. I am so scared
Dear Marina - I can give you a partial experience at least. Your story is very similar to mine...MBC in bones for 2 years while on Ibrance and letrozole. Scan found small lesions in my liver and I was put on Abraxane. I have had 6 infusions so far, with 2 more to go. I tolerated it really well - no side effects at all other than hair thinning and a bit of fatigue. It is similar to Taxol but is made differently or is in a different carrier, so patients tolerate it much better, The part I can't tell you is if it's working as I don't have scan results yet. The infusion I get takes about 45 minutes to go through my port and be flushed. I have it 2 weeks in a row then a week break. My MO wanted to get on top of the liver lesions....not sure what I will be taking after the Abraxane. Good luck to you
Hi, Thank you so much for sharing. I hope it works for you. I have 6 lesions in my liver but they did not describe size only the uptake. I also have lymph nodes in the pancreas area. My MO gave me three weeks on one off. I am glad you have no side effects. I read that people loose hair. She did not tell me how many infusions. I can recall her saying 3to 5 months. How many Mets in liver did you have? Are you on abraxane only? When is your scan? Good luck on it. Thank you so so much for your time, kindness and support. Please keep in touch. I am so scared Best,
Marina
Hi Marina.....I had 6 lesions on my liver too, same as you, and right now am only on Abraxane. Are they going to do a biopsy to see if anything has changed with the cancer? They did one on my liver but didn't get enough cells to test, unfortunately. My MO at first said 6 infusions, but since I was doing so well on it, she added more. I had an MRI and a CT scan 3 weeks ago, still waiting for results can you believe it? I have heard from others that Abraxane works really well on these darn lesions though. Fingers crossed for us both. xoxo
Thank you so much for sharing your experience. I know how it feels waitingt for the results. I wish you the best Pet CT showing NED. Please let me know. I had and endometrial cancer recently caused by the same pic3ca mutation. I had a surgery to remove it. The pathology report revealed many BC cells in the abdominal area and some lymph nodes. If I understood my MO right she will contact the hospital I had a surgery in and will send some tissue for genomic testing.
The best of luck to you.
Marina
Hi, Did you get the results of your tests? I hope they will be good. Good luck
Hi- yes, finally got the results after 3 weeks!! The CT scan was clear apart from the bone and liver issues I already know about. But now I have to go for an ultrasound on the liver lesions as the MRI report questioned whether some of them are hemangiomas. Still waiting for that appointment and still on Abraxane. Thanks for asking. ❤️
Thanks for sharing. I am glad that you got good results. What is hemangiomas?
I am not 100% sure but when I looked it up it seemed to be a pile of blood vessels! If either one of them is cancer I guess the Abraxane was a good call.
I see. Good luck
Hi. I got the first treatment on Friday. I have nausea and stomach pain. I was throwing up yesterday at night. Did you have it ?
Hi - I did have a little nausea but no stomach pain or vomiting. As far as I know, I was on a lower than usual dose, so that may have been why. I would definitely call your oncology team or the cancer clinic pharmacy as there is no need for you to suffer. Please call them and let us know how you are doing. Thinking of you and sending a hug. Peggy
Hi Peggy. Thank you for sharing. They did give me meds but I did not take them yet. I thought that I would avoid those side effects. People on abraxane shared that they did not have them.
yes many people don't have them, but some do. It will be worth it when Abraxane kicks cancer's butt for you! Hugs my friend
Thank you so much for your support Peggy. Do you have side effects like I do?
just a little nausea and tiredness. Not the rest
Are you taking zofran? Anti nausea med:?
no, my nausea was quite mild actually.
Good for you. I took one pill today.
Marina, so sorry for your results. Sending ❤️ and hugs for success with Abraxas. Hopefully someone here will have had experience with it!
Thank you so much for your kindness and support
We are here for you!!!!
Thanks a lot
So sorry to hear your news. I have no experience but want you to know you're in my thoughts! Stay strong!
Thank you very much for your support
It looks like my onc is also suggesting Abraxane as one of 3 possible treatment options: taxol or abraxane (2-3 weeks on, 1 week off), or doxil (!!!) once every 4 weeks. I'm scared too. 😭
Hi. I am three weeks on , one off. I got the first treatment a few days ago. People are saying that they tolerate abraxane well
Do you have a port? I'm considering it. Any side effects so far??
I do have a port. I have no veins left. I am very depressed. Still in pain after the port installation. Good luck to you
Oh no! Please find something to get out of your funk. What pain meds are you on?
Hi. Thank you. I am better.
Great to hear! Please don't hesitate to reach out or support whenever you need it!!!
hi Marina. have been following your posts. you have been through so much recently....so sorry to hear of all your struggles. I have no experience with Abraxane, however I did have 5 months of chemo back in 2013 when diagnosed with primary BC....including the 'red devil'. and no, it was not fun....however it was both tolerable and manageable. and here I am still.
I am so relieved to hear that you have gotten positive replies from others with first hand experience. I am sure that has eased a bit of your anxiety.
just want you to know that I am thinking of you......
sending a BIG hug.
carole XO
Thank you so much Carol for all your support. I also had chemo with primary. This is why I am so scared of it. I still remember those side effects. I am going through very difficult times now. I just hope for new drugs and most important for cure. I hate this disease. Best,
Marina
what was the chemo you had before? and when?
Tac. Taxol and two that start on a and c. Ted devil was one of them
well what I was going to say is that from reading the posts from the others, it sounds like Abraxane is easier to tolerate than the chemo they gave us for primary BC. so that is a bit encouraging. I had also heard that they have even made the chemo for primary BC more tolerable now as it was pretty rough. I know you are scared but hoping after you have your first treatment, you will realize you can handle it. you are stronger than you think!!
more hugs.....
carole💛🌷
Thank you so much Carol for your kindness and support. I am not strong. I am scared. I dream about cure every day.
Hi Marina, I think the majority of us have had the iv chemo. Like Carol, I had it after primary BC in 2016 and still fintting 6 years later. In just those 6 years, new drugs have come out, just like Carol has said that are tolerated better. Couple posters are taking it too now and can help with your new line of therapy. I feel for you being on so many different lines. How long were you using xeloda, before they switched you because it was progressing? I am on my second cycle"off week" and will start the 3rd cycle on Sat. I feel more pain off the drug than on it this 2nd cycle. I hope it works for me. I know others have said to stick with it, that it does work or starts to work in the 4/5 cycles. We are here for you Marina.
🙏 Blessings
Hi. Thank you for your message. I was on it from November. I was on a very low dose of 1500 mg. I could not have a higher dose. Hope it will work longer for you. Best
Marina
We all hope the treatment that our doctors think is the best for us works and works well, long term. All of us are hope that your next line of care on Abraxane will be the one easiest for you and actually does eliminate your lesions, etc. Sending positive energy to you! Paula
🙏
Thanks Paula for your nice vibes. Good luck to you
Yeah, sure Marina. I am hoping that we all get through our meds and stay well, well, stable. Have you ever heard about cannabishealthradio.com? I have read here that some are also taking this and it seems to really help. I take cbd and believe that it is helping with pain and using essential oils. Always here for you. 
Hang in there we are all on the same boat.
Hi Paula, I have never tried it. I do not know about it. I believe that we have a few hopes now. Erx41 is going to trials the first quarter of 2023ErSO is still gathering data for Ind fda application. I hope that something will be a break through. Hope in our lifetime
Hello Marina! That is great news indeed. I wonder why Erx41 got past Erso because Erso came prior to Erx41. At least we can look forward to the trials. Wonder how they will start them and the qualifying data from the patients that is needed. Still going to be at least another full year before offered to the public. I dearly hope we can all be strong enough with our treatments to see a cure to treat all of us.
Hi. Erx41 researchers did not announce it until they got approval to go to trials. ErSo researchers and media screamed that they got a cure and Bayer licensed it but then Bayer dropped it. The license went back to systems oncology that is trying to move it to trials but it takes very very long.
I keep my fingers crossed.
Hi Marina I have had Abraxane/ Paclitaxel treatments and found it very tolerable. The side effect of loosing my hair wasn’t pleasant as it made me feel like people now viewed me as being sick . I had very very miminal neuropathy in a couple fingers and toes . I was receiving herceptin & perjeta every 3 weeks also . Since finishing the Abraxane / Paclitaxel I continues with the herceptin & perjeta every 3 weeks . My hair grew back quickly after I finished the Abraxane / Paclitaxel.
If you have any questions please feel free to ask . This has worked for about 20 months and I will be looking at stitching treatment shortly. I really wish I could stay on this one.
All the best to you .
Luann
Hi Luann, Thank you for sharing. Did you get abraxane for 20 months? Are you triple negative? I am glad that the treatment worked out for you. Best,Marina
I am triple positive Marina . I had the Abraxane/ Paclitaxel for 6month s , 2 weeks on 1 week off . I have had a recent slight progression and oncologist has mentioned going back on it . My only hesitation is I don’t want to loose my hair again . I am waiting to hear from oncologist to see what options I have. Honestly the hair thing is the only reason why I am hesitant. I tolerated it well . Good luck to you
Thank you so much. Good luck to you as well. We’re you on Herceptin for 20 months after?
Herceptin & perjeta during Paclitaxel/ Abraxane and still continue now.
You may want to try inhertu. Good results
Yes it looks like it maybe a possibility. Thank you !
Good luck Amazing results
Please keep me posted. Good luck
Thank you I will look into it. I am not sure it is approved in Canada .
Thank you for sharing. My brother s friend oncologist said that it gives amazing results. It’s for her2 plus but I have her2 low Mu oncologist said that it might be an option for me as well. We should all survive until the cure comes out. I hope soon. Good luck
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