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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Hi @Raffles1
I just wanted to check in and see how you are doing now? You say you were feeling fine last month and I do hope that continued over Christmas and New Year and that you were able to enjoy some or all of it, and that the weather has allowed you out for some of those walks.
I’m hopeful that you are feeling supported by your hospital team in your decision to choose palliative care. What a big decision that must have been to make and I can only imagine the emotions you went through at the end of last year. Our colleagues at Macmillan have this useful information if you haven’t already seen it: Palliative care for people living with cancer | Macmillan Cancer Support The links to booklets at the end of the webpage are also very detailed and could be helpful for both you and your family.
Please do remember that our experienced Support Services Nurses are also there for you if you have any questions or just want to talk about it all - it could be practical things or questions about your care, but it also doesn’t have to be a big question, they are there to talk through whatever you are going through in relation to your blood cancer. Some people find talking really helps, and it does sound like you have had an awful lot to process in a short time. They are available on 0808 2080 888 or email support@bloodcancer.org.uk
You also mention your family members being adversely affected - without knowing the details, I simply wonder how that is making you feel? We are also there for them, so do let them know that if you think it might help.
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Hello Ali,
I’m fine thankyou and this is due mainly to being strong mentally (strength through adversity), good support from my Palliative Team (close contact, aid and support), Strong support from my family and Close support from a wide circle of friends (across the UK and in USA, Canada and the Netherlands).
Family is adversely affected, but we have all come to terms with my condition and we all deal with it in our own way, some of us with counselling.
I appreciate your offer of support. I have been in contact with Rebecca in the past.
We had a very good Christmas and New Year, where we danced the night away into the small hours.
I’m having a steady stream of friends coming to visit me, which is uplifting. They say I look well and I feel well.
I’ve been on Palliative care for 4 months now and have my next Palliative care meeting on Tuesday 28th January.
My Platelets are low at 17, on good days can be as high as 30.
So all in all, I’m ticking along, with lots of support (did I mention my GP surgery have been amazing).
I’ll update the forum after my Palliative care meeting.
Thankyou for enquiring after me.
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Oh @Raffles1 thanks so much for the update and so glad that you very good Christmas and New Year.
Yes, your situation is so, so difficult emotionally psychologically and practically for you, but also for everyone around you. There is no manual and everyone will deal and be differently, there is no right or wrong way.
Please do use us to say how it really is for you.
Yes, please do update us after your Palliative care meeting on Tues 28th Jan.
Be very kind to yourselves
Hi @Raffles1
Thank you for your reply. It sounds like you are surrounded by some wonderfully supportive people - and from so many parts of the world too. This is good to hear and also great that your GP is so good. Your Christmas and New Year also sound so fun - there is nothing like dancing into the small hours whenever possible in my experience - especially for feeling uplifted 
I hope your palliative care meeting tomorrow goes well. As always, we’ll be here if you want to share or need anything after - there’s no pressure to but we are here if there’s stuff that you can’t or don’t want to say elsewhere, if that makes sense.
All the best,
Ali
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Good evening Ali,
my Palliative Care meeting went well. My Consultant is pleased and yet pleasantly surprised at how I’m progressing. My bloods are holding steady. Previously my Consultant gave me a short prognosis of 3 months, but now says she can’t give a prognosis. All of which I take to be positive.
A question I have for you is this, my Reticulocyte count is 70.9 (normal range 50 to 100) and this as I understand it signifies that my bone marrow is producing my red blood cells successfully. This seems to me to be a massive improvement. Could you ask your colleagues their view as to whether I may be in remission please. I did ask my Consultant, but she was non committal.
Thankyou, very much appreciated.
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Hi @Raffles1 as your consultant was non committal with all your medical history perhaps your question cannot be answered.
I will copy your question to the Blood Cancer UK nurses for you @BloodCancerUK_Nurses though.
We really are individual complex beings.
Be very kind to yourself, in my book not knowing is anxiety making.
Please do keep us updated and really look after yourself
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Hi @Raffles1
I’m so pleased to read that you had a positive review with your consultant. This seems like great news and that your determination to prove them wrong with their initial 6 month assessment has hopefully come true.
One of our nurses is going to reply to you also about your question.
Hope you have a good day today and that you have some sunshine wherever you are
All the best,
Ali
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Dear @Raffles1,
Thank you for sending an update after your meeting, it sounds like things are steady which is good and I am glad you came away feeling positive.
With regards to your question about remission I would have to agree with @Erica, I think if your consultant is non committing we would be unable to add anything to that as perhaps there isn’t an answer. I would encourage you to take each appointment/blood test as they come and be reassured if things are stable. Perhaps the consultant will be able to answer these questions in the near future depending on what the counts do.
For now continue what you are doing, I have no doubt your mind set and mental strength is doing wonders for you! Keep doing the things you enjoy!
Do keep us updated on your progress.
Best Wishes,
Heidi J (Support Services Nurse)
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