I was diagnosed with multiple myeloma at the beginning of December 2021. I’ve been treated, first line, with DVT until end of April. This was successful and Daratumumbab was used which is a very good treatment. Although I’m nearly 69 years old I am eligible for a stem cell transplant but on 2 occasions I haven’t had enough stem cells in my blood for them to be collected. I was shocked when I was initially told as I thought it was a routine procedure but apparently in 10% of patients the stem cells don’t move out of the bone marrow. In 2 weeks time they are going to try again using cyclophosphamide chemotherapy and G-CSF injections. I’m concerned that I won’t be able to have a transplant, and disappointed asI’m eligible. Has anyone else experienced this?
I have Myeloma. Diagnosed 2017 had VDT with no response after 7 weeks and then ESHAP an intensive chemo that in turn didn’t help with stem cell mobilisation after 2 tries with GCSF we stopped for a week and then tried plerixafor still nothing or very minimal then had a second plerixafor and managed to collect enough for two transplants
It’s expensive have your team mentioned this at all or ask them for it
I know how disappointing it feels but don’t give up
Hi @voucher a great big welcome to our forum and I bet you are you are feeling more than just concerned perhaps you are scared and a lot of other emotions too.
I always think the unknown really scares me.
I cannot answer your question but I will copy your post to the Blood Cancer UK nurse advisors @GemmaBloodCancerUK @LauranBloodCancerUK @Heidi_BloodCancerUK and the Blood Cancer UK support line is there for you firstname.lastname@example.org.
Someone else might be able to help you with their experiences.
I look forward to hearing more about you.
Look after yourself and be kind to yourself
Thanks for your reply. I’m going to have cyclophosphamide first, then 6 days of Lenogastrim injections then if my stem cell count is 5 or 6 they are going to give me plerixafor. It is expensive but so is the Daratumabab which I had as first line treatment.
Thanks for replying, and offering advice. I just found this forum this morning. I was reading the Myeloma booklet, which the hospital gave me last December, and came across it on the bottom of one of the pages.
I was so shocked to be given this diagnosis that I went quite light headed in front of the consultant, but managed to control my emotions! I was given lots of information but I came home and threw it all at the back of a shelf and I am only just starting to read the booklet in more detail.
I feel quite isolated as I don’t know of anyone with myeloma so it’s good to have this forum and I went to a support group last month, at the hospital where I go for appointments, and got talking to several people with the same disease.
Oh @voucher I was diagnosed in 2003 with Chronic lymphocytic leukaemia (CLL) and as you described your shock, feeling light headed and yes, I controlled my emotions too.
I also remember feeling so isolated and lonely, I thought I was the only person in the world, there was no forum or support groups at that time either.
I am so glad you have found our forum and a support group, I hope you will find both supportive.
The main thing is that you look after yourself and be ever so kind to yourself, oh, and keep posting.
I have had second line treatment with dvd which worked well for me to have my second transplant
Im also having maintenance dara
Hello there @voucher and welcome to the Forum. You do sound like you are tolerated the treatment very well, may I ask how you are feeling? It must be very disappointing to have had repeated bone marrow harvests without success, have you had the cyclophosphamide before? This is something that can happen but as you mentioned in a relatively small proportion of patients. Have you been able to talk to your Clinical Nurse Specialist or Consultant about what options are available for you if this next harvest is not successful? It may be worth discussing this and having a plan in place? We will be hoping that this next harvest in 2 weeks is a success. Do call us if you need any support: How to contact Blood Cancer UK | Blood Cancer UK
This is a great forum, I to didn’t find it until a good while after treatment. I was diagnosed with Myeloma 03-08-20 the. Had stem cell transplant in Jan 21. You will have loads of questions and thoughts to think of. Get a book and write them down to allow you to ask your Nurse or Consultants when you meet with them, I find them very helpful to answer your questions I have had a NHS specialist then a private Nurse all brilliant and so knowledgeable, luckily I kept the same consultant and that was brilliant.
There is loads of knowledge on this forum and helpful people so alway feel free to post a question as I am sure others will jump in and offer experiences or advice. Also both Myeloma UK and Blood Cancer UK web sites have so great info, both to read or to watch videos. Always stay positive, listen to the body (hard to do, can’t believe I wrote that I am the worlds worst as I always push myself hard then the fall when the fatigue hits is big/ if I paused earlier I am sure it wouldn’t be!) best wishes with your journey, feel free to shout out for anything you might need
I had a stem cell transplant. They gave me GSF injections beforehand to boost the stem cells and then checked my bloods regularly. It was slow to get to a level when they could harvest them. Normally they like to take enough for two transplants but in my case didn’t manage that. However the one transplant has last for ages and I’m still in remission. If you haven’t had GSF beforehand this may make the difference. Good luck.
Thank you for your message.
I find that people are responding to my messages on the myeloma forum and it does help to know there are many others out there who have this type of cancer like me. For a long time I didn’t read any literature I was given, just hid it away on a shelf, as I was so shocked that I was told I had cancer! I didn’t feel unwell, apart from a slight pain in my back which I put down to the way I was sitting on the settee. I didn’t even take any painkillers, such as paracetamol, and my haemaglobin was 85! I didn’t feel tired or breathless, was still going to the gym and going on the rowing machine for 45 minutes.
In June they tried to collect my stem cells for a transplant but they had to stop as I only had a readng of 2. Three weeks later I was given cyclophosphamide then injections for 6 days but again I didn’t have enough stem cells. Next week, last attempt, I’ll be given cyclophosphamide again, then a higher dose of the G-CSF injections and also a dose of pleraxifor. Apparently some patients don’t produce enough stem cells to collect. I’ve been very disappointed and a bit concerned too. The professor has told me there are many other treatments I can have if I don’t have a transplant. I was the first patient to have been given Daratumumbab as first line. Have you had any other treatment since your transplant?
I had G-CSF injections first time but then they couldn’t collect enough stem cells. At the 2nd attempt I had chemotherapy, Cyclophosphamide, then 6 days of G-CSF injections but my count was only 2. Next week I shall have the chemotherapy again plus a higher dose of G-CSF injections for 6 days then, hopefully, Plerixafor.
Thanks for your message.
Thanks for your message.
I’m feeling fine thanks, just trying to get on with life although I’m not meeting up with friends indoors as I don’t want to catch covid. I’d like to visit family who live 175 miles away but I’m being so careful at the moment. Haven’t seen them since Christmas 2019. However, I do regularly see my sons so I’m not that isolated although they don’t live locally. I go out walking with friends when it’s not raining or too sunny.
Yes, I had Cyclophosphamide last time then 6 days of G-CSF. Stem cell count was only 2. We asked my consultant if he could increase the dose of Cyclophosphamide from 1.5 to 2.0g but he wasn’t comfortable about it as there are serious risks. Next week I will be given Cyclophosphamide again, then a higher dose of G-CSF and hopefully Plerixafor.
The consultant said that there are many other treatments available now if this final stem cell harvest fails. I had Daratumumbab as first line treatment which has only been available since January.
Anne ( Voucher )
Yep this is a good place to seek feed back and help, lots of knowledge.
I felt well and hand no real issues. The start for me was I sneezed and broke two ribs, I am asthmatic and couldn’t get my inhaler in and I obviously blacked out as when I came round I was in the floor in my lounge (was stood up taking my inhaler before I lost consciousness) with 3 ambulance staff and 2 rapid response paramedics. I got took to hospital and they found I had broken my ribs. Took almost 3 months for the pain to go away.
Then I stepped out of my house to go to work and collapsed in a heap on the floor, lost all feeling from my waist down. Long story short that’s how they found it, my disc had collapsed. Lots of tests later blood, bone marrow they diagnosed Myeloma.
So great treatment, advice and stem cell transplant in Jan 2021 I am a good way into recovery. Halted a bit of fitness due to having to have a hernia ops 6 wks ago but starting to get back in the recovery process again.
The mid if it’s callabrated right can make the body recover so well, but can also be a pain when you want to do more and your body doesn’t.
Read the literature and watch the videos it will give you a lot of info and generate some questions for you to ask you team to help you get your head around it and then you can use your strength to get better.
Best wishes and feel free to keep asking the questions
I was diagnosed with myeloma at the end of August 2021. My son recommended I look for a myeloma group in my area which I did. Everyone attending has myeloma so it has been great for support and information. We meet every month and have guest speakers giving medical and financial advice. We all have each other’s phone numbers so if feeling low and need a pick me up can ring someone any time. I have been through the wringer with this disease going from super healthy to disabled in a matter of months, suffering several crushed vertebrae and broken ribs. I am now in remission following a stem cell transplant 3 months ago, results given to me last Friday, so need to concentrate on getting on with life as best I can. My crutches have become my best friend but hey at least I am mobile, alive and enjoying the sunshine.
Best wishes Anita
Hi @voucher I have been thinking of you and just wondered how you are doing now?
Look after yourself
I’m just waiting for a chemotherapy drug called cyclophosphamide at the hospital. I’ve been waiting around since 11am. They are going to try to collect the stem cells again. Hopefully they will move out of the bone marrow and into the blood. That will be in 10 days time. I hope I’m not sick after this chemotherapy.
Thank you for messaging.
I was wondering how you were getting on
Will you be getting the plerixafor
I had cyclophosphamide yesterday at the hospital, it was a long day! I haven’t felt too bad this second time as the first time I had it I was sick and felt " washed out".
I have 6 days again of G-CSF injections then I will be given at least one dose of the plerixafor.
How are you doing?
Thanks for the message.
Need a bit of advice on Stem Cell potential treatment.
Are you able to help with?