Hello again everyone! My wife is due to start treatment very soon as she's in a dreadful way ATM. She has mets to lung and this is really causing issues now.
Anyway, we start Abraxane and Atezulizumab (immunotherapy) as she's PDL1. We were talked out of Capecitabine as first line as the immunotherapy has shown good long term results. We are not confident about the Abraxane as during treatment for breast cancer in 2018, the Taxenes family seemed to make the lump grow. As it's in the lung, we can't afford for this to happen again.
Any help or advice, experience or positive stories may help us ATM, we are both pretty scared. Susie had no real symptoms for 6 months while we had inter tumorial immunotherapy but it's really progressing now, we need to do something to bring it under control. We are UK using NHS treatment but we also have a consult with Dr Keith Block in Chicago IL, we are hoping he can advise combination therapies to help the efficacy and reduce toxic side effects.
I always look forward to reading your reassuring posts and great advice.
Leo (and Susie). X ♥️
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Winner123
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I have been on Abraxane for three weeks now. I wish I could have an immunotherapy drug with it as I hear many positive stories about these combos. As you know, it comes down to your mutations and what your onc believes will work for you. So as for the Abraxane - I was told Abraxane is "more gentle" then Taxol which is also in the taxine family. I am not given any premeds with abraxane. So far my biggest side effect seems to be feeling very 😴 sleepy during the day which I hate! I was dx denovo in 2017. Abraxane is my 6th treatment now. It is early to tell how it is working although a tumor I used to feel is not as evident now. I am hoping it is the Abraxane at work. Also, Keith Block has a great reputation! I have one of his books - he does an integrative approach. Let us know what he says. I am impressed you have an appt with him. I wish you both well. I understand as most of us on this site do your fears and concerns. It seems like you are in good hands and have good guidance. Keep us posted!
Since you are going to be in Chicago, you might consider getting a second opinion at Northwestern Memorial Cancer Center, a very highly regarded Cancer Center. Dr. Block is definitely outside the norm and not someone that I would consult.
I am on the combo of Abraxane/Pembrolizumab (immunotherapy). I have had one cycle, in the middle of my second cycle now. In total I’m supposed to have six cycles. After the 6th cycle Abraxane will be dropped and I will just be on the immunotherapy. Right now I’m dealing with bowel issues (diarrhea), abdominal pain, losing my hair by the handfuls, little tired and bodyaches. The achiness usually subsides by the second or third day after treatment for me. Imodium has been my friend and now I’m on a anti-spasmodic medicine too. I also have PDL1 one. Capecitebane was offered to me, but my oncologist recommended the immunotherapy. I haven’t heard of Dr. Keith Block, and would be interested in hearing what he says. I know this is so scary for your wife and you, but hang in there! Once treatment begins, your wife will start feeling better. My oncologist told me that I will be very happy with the results from this treatment and she said it with such confidence! I hang on to those words! Wishing your wife much success with her treatment -please keep us posted!
Thank you so much for your reply. Did you use a cold cap during treatment? We didn't first time round but I strongly considering it this time just wondered if it helps? Leo and Susie X
I have heard a lot of ladies have used it and it has helped. I am not cold capping. I don’t want to be in the chair any longer than I need to be, and I can’t stand being cold! I am icing my hands and feet during treatment to hopefully ward off neuropathy.
Hi Leo and SusieI don't have any experience of these I can help you with I'm afraid, but I'd be very grateful if you could let me know how you got in touch with Keith Block from the UK and how it is happening - is it just a call or are you going to the States? Is it actually with him?
Hi Kate. Just contact the block centre and book it. It's £1400, ($1875) for an hour with Dr Block and 3 other appointments with nutritionalist, few others. X
Not yet, no. We will have the consult, get this treatment underway and see where we go from there. We started a gofundme a few weeks ago to try to help out with any further treatments. We have some money but not enough for some of these things! Everyone wanted to help so we thought we'd ask. The response has been humbling.
Good luck with your treatment Susie. Sending best wishes and willing it to work ASAP to let you enjoy life as fully as possible again. My son was 9 when I was first diagnosed with BC, third time now and MBC and onto Ibrance 2020 bones and pleural . It’s been a journey and he is 18 and starting Uni Sept which I never thought I would see. He’s a stronger person and a very understanding young man with going through the journey with me. We have travelled all over the world in that time even when I prob have felt so awful I should not have but I don’t regret anything in life,I have always been age appropriate honest with him.You can do this you have a lovely family there. Lots of love.Debra ❤️
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