Hello all,
Apologies for a morbid rather negative topic but I don’t want to be unprepared.
I had my CART infusion in October. My 1 month scan showed a complete response but my 3 month scan showed that something had returned - that was 27th January.
The medical team have moved quickly but sadly I need a biopsy to look at how eligible I am for clinical trials. The downside of this story is that the biopsy is not until 27th February and then I assume it will be two weeks until I hear back what the mass is. After which I am unsure how long it will take before I start a clinical trial. Will I still be physically able? Will I be alive?
My cancer before CART was NHL DLBC.
Maybe one of you or a relative have had a similar experience. Any insight would be helpful.
A great big welcome to our forum @Marcus I cannot help you medically or with your question which I don’t see as morbid or negative but perhaps that you are scared of what might be in your eyes and want to be prepared…
Perhaps these questions should be asked of your medical team, I wonder if you have a key contact or phone number.
What a lot of us find on here that it is an emotional roller coaster and the never ending waiting and feeling out of control are the worst feelings.
I will copy your post to the Blood Cancer UK nurses @BloodCancerUK_Nurses in case they can add something.
If you would like to talk to the Blood Cancer UK support line it is on 0808 2080 888
Please keep posting I look forward to hearing more about you.
Please look after yourself.
Hi @Marcus, thank you so much for taking the time to share this and a warm welcome to our community. May I ask how you’re doing? It sounds as though it’s been an understandably worrying time for you, and I’m pleased you’ve reached out here. I wondered if you might find it helpful to speak with a member of our Support Team? We could book you in for a scheduled call to talk things through with one of our Support Services Nurses? Please don’t hesitate to call us on 0808 2080 888 or you can email us on support@bloodcancer.org.uk if you’d find that helpful at all.
I can only imagine how tough it must be to have to wait for the biopsy and subsequently wait to hear back. It’s normal to have questions at this stage and to wonder how things will look for you going forwards. Erica mentioned speaking with your medical team- if you do have a keyworker/Clinical Nurse Specialist contact, we’d encourage you to share your concerns with them, so they’re better able to support you at this difficult time.
I thought I’d mention that we do also have a Clinical Trials Support Service, which you can read about here- Blood Cancer UK clinical trial referral | Blood Cancer UK. Although, we’d be happy to tell you more about this service over the phone if that’s helpful.
Take good care of yourself, and please do remember that we are here for you.
I’m sorry to hear your news about the results of your 3 month scan after your CAR-T infusion. Its such a roller coaster going from good results (your 1 month scan) to the return of the bad cells.
I am now relapsing after a second Stem Cell Transplant for myeloma. I would highly recommend the BCUK Clinical Trials service mentioned above by @TanyaBloodCancerUK . I had a Zoom conversation with one of the specialist nurses who has been a huge help and encouragement to me in looking to see if there might be a suitable clinical trial out there.
Nothing is moving very fast for me at the moment but the experience of contacting the specialist trials nurse has given me a lot of information and also some hope for the future. I hope you will find the best kind of support to tap into for your situation. Do let us all know how you get on.
Thank you for responding. My gosh, I am sorry you have had to go through two stem cell transplants. I am sorry to say that I appreciated your post because it gave me strength since you must have gone through so much and yet you are still here but with a new challenge. How have you dealt with the uncertainty? I keep myself in the moment and enjoy the people around me. I stop myself thinking about the future - being there with my partner, my kids and family. I am thankful that they are all incredible and tough. Ah, just rambling now.
I’m happy to read that you saw my post as an encouragement. I think there are a whole combination of things that help me. One is that when I was originally diagnosed (remember treatments weren’t so advanced and effective ten + years ago) I was given an approximation of 3 years to live. Every day since then feels like a bonus. My husband and myself made our peace with the incurable - but treatable - nature of myeloma and decided that if we had fewer days together than we’d once thought, we didn’t want to waste them being negative. That isn’t to say that a few bad days don’t creep in from time to time…which is perfectly normal.
Recently I came across the following resource on the Myeloma UK website, which I found especially helpful. Dr Sarabhi Chatuverdi is a Psychotherapist at KCH London working with all types of blood cancer patients, so this resource is not myeloma-specific:
Dr Chatuverdi explains the gap between the ‘loss of the assumptive world’ (e.g. living until old age with pretty normal health) and the lived experience of a diagnosis of blood cancer. She covers topics such as how to worry ‘constructively’ and she has a brilliant slide showing ‘what coping looks like’ i.e. an oscillation between uplifting feelings, such as hope and zest for life and less-comfortable but very natural feelings, such as shock and hopelessness. The talk itself is about 35 mins long with Q’s & A’s afterwards. The Q’s and A’s do relate more to myeloma but the talk does not.
Also on a more personal level, I have a faith in God which helps me put the suffering side of myeloma in a different context. The community aspect of having a faith brings encouragement and comfort. We live near the sea and I find getting out in the fresh air and enjoying the beauty of nature is a real help on a daily basis too.
Sorry if that’s a very long answer!! I think we all have a lot of resourcefulness inside ourselves that come to the fore when faced with these kind of challenges. I hope you will find the recipe that is right for you and helps you forward.
Hi there! I’m Primary Myelofibrosis intermidiate 1 with lots of monthly ligations and all of the symptoms, bow on jakafi but after 3 mths my anemia is getting worst, thinking to stop my meds and just take my standard sop meds like anticoagulant etc, so what i can say is keep the faith, don’t over think about things too much, just let it flow and enjoy the journey as I tried my very best through ups and downs to be grateful in order for me to enjoy the ride! So… hang in though, keep the group posted. Take care!
Hi @Dan0921 I am presuming you are discussing your thoughts with your medical team so please let us know what you decide.
Keep riding that colourful roller coaster and take lots of care of yourself.
Thank you @Dan0921 , I appreciate the “just let it flow”. I sometimes have this moments when I realise how lucky I am just to be alive, chatting to my daughter and my fiance, being able to tell those closest to me that I love them. I try the Marcus Aurelius quote “The happiness of your life depends upon the quality of your thoughts”. I am awaiting a Biopsy and then hopefully find out what clinical trials are open to me. My dad hopes that the tissue collected will be dead tissue, which is a nice hope although not at all probable.
You have a great memory. Thank you for asking. In fact I eventually had my appointment yesterday! It was originally scheduled for 27th Feb (your biopsy day, I think?)
Thank you also for the link to the ProMMise trial article. It does indeed look promising. The researchers come up with some brilliant names for these trials!
My conversation with the BCUK trials nurse really inspired me to want to be part of a trial but the inclusion/exclusion criteria are complicated: it seems as if I’ve either had the ‘wrong’ treatment or not had the ‘right’ treatment to fit in with various trial requirements. So I might be having Ixazomib, Revlimid and Dex (IRD) instead, but nothing has been decided yet.
The waiting is hard, isn’t it… Next Monday has seemed an age away for weeks and I’ll remember to think of you having your biopsy on that day as the date was etched in my mind.
My husband is busy converting our bathroom into a walk-in shower , in case I get too creaky to manage the bath. This is always how it feels before the start of treatment (I get a lot of bone pain when I relapse) but I have been fortunate enough to have many good surprises so far whereby the treatment stops the pain, so I remain hopeful. Either way, the shower will use less water so it’s not a waste of his time and it is keeping him busy and distracted.
, in case I get too creaky to manage the bath. This is always how it feels before the start of treatment (I get a lot of bone pain when I relapse) but I have been fortunate enough to have many good surprises so far whereby the treatment stops the pain, so I remain hopeful. Either way, the shower will use less water so it’s not a waste of his time and it is keeping him busy and distracted.