Hiya
I start back in my trial next wed it’s 4 cycles
I will be on Lenalidomide, Bortezomib, Isatuximab and Dexamethasone, then from cycle 5 I’m on Lenalidomide and Isatuximab.
Consultant said there shouldn’t be any side effects, so it’s every wed back to hospital for me.
How’s hubby doing and does he have a date for his bone biopsy?
Take care
Paula xx
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Hi @Paula1 ,
Hubby has decided he wants to remain on the myeloma trial too. He is keen to do his bit and help research.
He has had his bone marrow biopsy but we don’t get the results for a week or so.His consultant has told us he will start his 4 cycles tho next week. He will be on the same meds as you have mentioned. Did you take isatuximab before , I can’t remember when you listed what you were taking., when you did induction treatment. Hubby has always been on it. That means he will be having his next treatment the same week as you.He is still trying to put his weight back on, but his energy levels are slowly increasing. He hasn’t got his full appetite back yet. We didn’t realise he would have to do so much more chemo, which he tolerates ok, but it ties you to the hospital. I was hoping once his energy returned we could have trips out and some overnight stays. Just to cheer him up, mental health is so important. How you feeling in general, are you still doing ok with fitness? Will you be finish8ng treatment then after cycle 5 ? You have done so well,Paula, I’m sure it will be business as usual for you with the treatment.
Take care, keep us updated please, sending you a big hug.xx
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Hi Olivia
Had a long day at hospital yesterday 9-6.30
Had a bad reaction to the isatuximab made me sick, haven’t had this one before but the nurses were good and controlled things for me. Much better today just a fuzzy head.
Has hubby been for his treatment yet this week?
Take care xx
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@Paula1 ,
Sorry to hear you were sick, I’m surprised as you tolerated all the drugs well during your induction treatment. It’s a different drug I suppose for you.Hope you feeling better now. How did you do with your last bone marrow biopsy, hope it went well and you achieved remission… Hope all your numbers are doing well
too.
Hubby was due to start consolidation treatment but his neutrophils dropped so he has had more bloods done. If the next lot improve he will start treatment.
He did have isatuximab previously and was ok, so we are hoping he will be the same again. Obviously having had a transplant it’s like resetting to zero, so the body could react different this time.
I’m sure you will get used to the drugs or they may reduce the dose or change them for you. Make sure you look after yourself. Keep us updated and get in touch anytime.xx
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@Raffles1 Just checking in to say hi. Haven’t heard from you for a while and wondered what stage you were at? How have you been doing?
@Paula1 , hope you feeling ok after the isatuximab. Hubby’s bloods back up ( neutrophils) so he started consolidation treatment last Friday for 4 cycles. I’m hoping he responds as before.
Hello also to @2DB , @Erica , and all you lovely folk on this forum.
Keep the faith, look after yourselves, take care.xx🥰
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Hi Olivia
I’m feeling much better now thank you, it was like drug overload and zometa all at once.
Hope hubby does fine on these cycles
Hello to everybody on here
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Good luck on your journey @Raffles1. I’m just started chemo for Myelodysplastic syndrome (MDS) and I’m very anxious so I keep asking about the transplant part but all the doctors tell me to concentrate on the treatment now but I can’t stop thinking about the month I’ll be in isolation for the transplant. I’m sooo glad you have now a good team of doctors
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I was put on Venteclax as a bridge towards a stem cell transplant and this was running in conjunction with the Azacitidine. To monitor after cycle one of the Venteclax, I had a bone marrow biopsy, which showed the blast had been reduced from 30% to 11%, which was encouraging. Two weeks later, I contracted Neutropenic Sepsis, which resulted in a hospital stay of two weeks. It was a close run thing and I decided to go onto Palliative Care. I was then sent to the Pilgrims Hospice in Ashford, Kent. I was in the Hospice for three weeks before being discharged back home.
I’ve now been on Palliative Care for a couple of months now and am feeling fine. I’m active and getting out and about. I’m told that I look well and am looking forward to Christmas and the New Year,
The prognosis I’ve been given is six months, but I’m determined to prove them wrong!
The Stem Cell Transplant is no longer an option I’m afraid.
I wish you and your family a happy Christmas and a New Year filled with wonder.
Here’s to Life.
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Oh @Raffles1 you have had a lot going on, it cannot have been easy for you along the way.
Yes, here’s to life and I am glad that you are looking forward to Christmas and the New Year.
Please do keep posting how things are for you and I find that this is the one place where I can really say how it is for me.
Be very kind to yourself
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It sounds like you’ve been on quite a journey.
I hope you have a wonderful Christmas and a happy new year.
Keep updated on how you are doing 
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Here’s my update.
The science: I was diagnosed on 3rd October 2023 with Leukaemia, Chronic myelomonocytic leukaemia (CMML). Chronic Myelomonocytic Leukaemia (Chronic myelomonocytic leukaemia (CMML)) is a rare type of Blood Cancer. In Chronic myelomonocytic leukaemia (CMML) there are too many monocytes in the blood. Monocytes are a type of white blood cell that fights infection. The World Health Organisation (WHO) has included Chronic myelomonocytic leukaemia (CMML) in a group of Blood Cancers called: Myeloproliferative Neoplasms (Myeloproliferative neoplasms (MPN)).
So that’s the science, the impact: It has been a life changing journey since that awful day of the diagnosis. So many emotions and so many medical events. So many family members adversely affected.
And now the journey: I was put onto to Aczadine as my Chemo within 48 hours and this continued through to August 2024, at which stage I was put also onto Ventaclax as preparation for a Stem Cell Transplant. In the August of 2024, I went down with Neutropenic Sepsis and this meant me being admitted into Hospital for 2.5 weeks, where I went onto Palliative care by my choice. I was then admitted to a local Hospice for a further 2.5 weeks, after which I was discharged to home under Palliative care. I remain under Palliative care. I live by the day and with an attitude of living my life to the full by going out for walks, restaurants, pubs etc.
My thoughts: The fight against Blood Cancer is ongoing, with great strides having been made in recent years. Research is made possible by the provision of funding and increased funding through charitable events such as runs, are to be encouraged. My plea and the plea of others with this terrible disease is to please give as generously as you possibly can. My prognosis is not lengthy, but I truly would like to think that Blood Cancer will be eradicated in the near future. My friends, you can help to do this. Lets together make this happen.
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Oh @Raffles1 what an easy to read post.
Thank you for writing it and it shows your decision making so clearly.
Please do be very kind to yourself and yes, live life to the full daily.
The Blood Cancer UK support line is there for you on 0808 2080 888.
Take lots of care and please do keep posting
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