Hi my husband was diagnosed with myeloma while in hospital a few weeks ago. He had his second chemo yesterday (DVDT with thalidomide). He has 70% plasma cell burden and 3 high risk cytogenetics (known as triple hit). He has lesions and bone compressions in his spine, very painful. He is 47 and we have 2 young kids. Was wondering if anyone has had similar and has beaten this? Thanks
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Oh, @MumOfTwoBoys I am so glad that you have found us, welcome.
It sounds as if you and your husband have had a lot going on in the last few weeks.
I did not realise the shock I had when I was diagnosed, with a different blood cancer, so really look after yourselves and I dealt with my diagnosis very differently to my husband.
My mind went to the âwhat ifâsâ, âwhy usâ etc
I know this is very difficult but perhaps try to keep it in the day, that is as much as I can cope with.
How are your young kids, I ask because in my experiences children pick up on things and often put 2 & 2 together and make 5?
The Blood Cancer UK nurse support line is there for you on 0808 2080 888.
The Blood Cancer UK website is also there for you.
Please look after yourself as well as I expect you are looking after everyone else.
I hope others will be able to share their experiences for you.
Please do keep posting, we are here for you so you can say how it really is for you.
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Hi there
Hereâs a link from myeloma uk
Hereâs a link to Martin Kaiser his particular focus is high risk
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Thank you 
.
The boys are fully aware their Dad has cancer, it was the first question they asked. My own dad has been in remission from stage 4 non-Hodgkins lymphoma for 3 years so they have had a âgoodâ experience with cancer.
My eldest is avoiding us (teenager!) and my youngest is clingy and very very caring of his dad.
I am totally taking this one day at a time but I also like to know everything and plan ahead. It helps me cope.
My husband is different, he prefers not to know all the details so what he does know is limited to âcancerâ and âtreatmentâ 
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Thank you thatâs interesting. I will look into it.
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@MumOfTwoBoys , sorry to hear about your husbandâs diagnosis. Me and me family are in a similar situation. Iâm 50, and have been diagnosed recently with triple mutation myeloma with several bone lesions and pain. Ive had my second week of chemotherapy today and Iâve been placed on the Daratumumab, Dexamethasone, Venalidomde and dexamethasone induction. Looking at the study that has been posted I will ask about Cyclophosphamide.
Emotionally itâs been hard for us. But we are determined to get through this (we have two boys also 17 & 13)..
We are based in Australia.
I hope your husbandâs chemotherapy goes well and he makes a full recovery.
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Hi @Tash welcome to our UK support forum.
As you are in Australia treatment regimes and available treatments might vary country to country.
As you say emotionally it has been hard for you all and I think many of us share similar thoughts and feelings and probably practicalities.
Look after yourselves and thanks for letting us know about you
Hi Tash, how are you doing? How did the dvdt go?
My husband had his intial therapy which went well. He is now having cyclophosphamide as a primer for a stem cell transplant in a few weeks. Unfortunately he has to have a second set of apheresis (stem cell harvesting) as his body didnât produce enough stem cells for collection. This is in the next few weeks.
Just wondering how you are doing and how your kiddos are managing?
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Hi @MumOfTwoBoys,
Thank you for thinking of us 
.
I am glad that your husbandâs initial chemotherapy has gone well. Sorry that they are struggling to get stem cells. However, it is not uncommon to have more than one stem cell collection day. l am few weeks ahead of your husband in terms of therapy and am currently in hospital for my stem cell transplant which will be tomorrow. I have just received my Melphalan today. Now, itâs a waiting game.
The initial chemotherapy (Dara,Velcade, Revlimid, Dexamethasone) put me in partial remission.
With regard to stem cell collection, I had a very similar experience. My stem cell collection took 3 days. My hematologist thinks that it may have been a Combination of the Daratumumab and some radiotherapy that I required for bone lesions early on that may have suppressed my bone marrow. At the hospital I went to, they did the stem cell collection on consecutive days. They also doubled my dose of GCSF (called Filgrastim here) and after the first day added another medication called Prelixafor, which also helps get the stem cells into the bloodstream. They finally got enough after the third go. I then had one more cycle of chemotherapy (which made no further difference to my paraprotein level).
With regard to our teenage boys, we have always been up front about the treatment and its effects. They do take the information in but donât ask loads of questions or talk much about it. Our older son is currently giving his year 12 exams so he has a lot on his plate.
I think just them asking occasionally is a sign that they are processing the information in their own way. I can tell that they worry about me but they just express it in different ways.
One thing that I can say is that my wife has been an absolute Rock for all of us through this process. She has maintained a positive attitude towards recovery and has encouraged me to continue my day-to-day life as I was doing before the diagnosis with some modifications. She has also had to take on additional responsibilities looking after all of us. It looks like you take very much a similar role and I am sure your husband and boys appreciate this in their own ways.
In all of this, it is very important to look after yourself and give yourself that time and permission to spend some time in doing things for you. Talking to your friends and meeting can help a lot.
I hope the rest of your husbandâs treatment goes well and he continues to respond well.
Take care.
Tash
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Hi @Tash I just wanted to say I will be thinking of you having your stem cell transplant tomorrow.
Please do keep us posted when you can.
Really look after and be ever so kind to yourself
Hi Tash, best of luck for tomorrow. Thinking of you and your family.
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Hi Tash, how did the stem cell transplant go? How are you doing? Hope all is well.
Thank you @MumOfTwoBoys and @Erica for your wishes. They mean a lot to me and my family.
How is your husband doing? Has he had his transplant yet? How are you and your family coping?
Apologies for the long post, writing it helped me go over the last 2 months and the process was quite therapeutic.
The transplant went as expected, a couple of days after my last post, things began to get rougher (nausea, diarrhoea and generally unwell + fatigue). The diarrhoea and most of the nausea resolved about 2 weeks after Melphalan. I was discharged home 17 days after the transplant.
My blood counts recovered over the next few days, and they were able to remove my central line at day 21 as my platelets had recovered to 60 (they were 4 on discharge). My centre did not give me any blood products (they had me on the âtherapeutic platelet pathwayâ - which meant platelets would be given only if I bled). I had some petechial spots on my legs, but nothing else. White Cells and Neutrophils recovered more slowly, but were back to normal(ish) by day 28.
To cope with the nausea, I ate little and mostly pureed stuff in the hospital. Post-discharge, my sense of taste and smell changed a lot, and I went completely off coffee for some reason! The nausea took another week or so to resolve, and I havenât had any anti-nausea medication for a month now. I am now day 67 post-transplant. Despite everyoneâs best efforts, I lost about 8 kg during and just after the hospitalisation. I generally sit at around 70-71 kg, but had built up to 75 kg preparing for the transplant and went down to 66.3 kg at its minimum. I am now back to 71kg and eating normally with my taste and smell having recovered.
The fatigue will take longer to resolve. I think exercising has helped. I started light exercise 2 weeks post-discharge and am now exercising almost daily and am recovering my stamina, energy and concentration. I am not back to pre-transplant levels. I am still quite far from pre-diagnosis. I was fairly fit and did a lot of exercise. I can tell that I am still some way off by measuring my output on my bike (prediagnosis workouts up to an hour with 180 watts average output, pre-transplant 45 mins, 130 watts, now 30-40 mins, 105 watts), but itâs slowly tracking up. I am also doing weights - please consult your hematologist before exercise, especially if your husband has bone lesions. I must admit I found the advice from all quarters very general. I have found exercise to be very helpful for my physical and mental well-being. I am doing most daily tasks, getting out (attended a Metallica concert the other week - seating outdoors only - no mosh pit 
), and have restarted very part-time work this week. My hematologist is very impressed by the speed of my physical recovery. I am also off my painkillers for my bone lesions (previously on round-the-clock paracetamol, twice daily targin and nightly Endone). Some bone pain is still present.
Unfortunately, the transplant has not made any difference to my paraprotein level (5 pre and post transplant). I am not going to lie, this has been disappointing, but I am told that it can continue to fall for up to 100 days post-transplant. In positive news, I have been accepted onto an Elranatamab trial for post-transplant patients, and I am in the hospital for this week, having had my priming dose this morning. My hematologist thinks that, given my plateaued paraprotein level, this is the best chance of achieving complete remission. Fingers crossed!
My wife remains the pillar of my life, staying positive while supporting me throughout the Myeloma journey. My extended family and friends have been amazing supports. Everyone has made sure that if they come over or I go out to them, they let me know if anyone is unwell, so I can plan accordingly. My older son has completed grade 12 and is awaiting his results and planning where he will go to uni. Our younger son starts grade 10 next year. We keep them posted about how things are going, and they sometimes ask questions, but I am getting more hugs from them lately, so they are worried about me. We try and keep things as normal as possible, and I think this helps me a lot to not dwell on my treatment and the future uncertainty. Overall, I remain positive.
I hope things go well for you and your family. Take care.
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Hi Tash,
Thank you for sharing your experience, I appreciate it. Itâs helpful to know that what my husband is going through is not unusual. Iâm going to share your experience with him if thatâs ok.
My husband was actually discharged yesterday after 19 days. He is struggling with the side effects - particularly nausea and the fatigue. He is very happy to be home as the hospital room was driving him up the wall! Although the care was great he just doesnât like hospitals.
In hospital he had 4 platelet transfusions and was on IV fluids and antibiotics, practically around the clock, as he had neutropenic sepsis. His neutrophils are rising slowly. He has kidney damage so his creatinine levels are also being monitored. We are waiting to hear about paraproteins etc.
Hubby is down to 60kg, very thin unfortunately. Iâm happy to hear you have managed to increase your weight back towards normal levels as the nausea kind of dropped away, and started up exercising again, as thatâs something for him to look forward to. Hubby was also very fit and hates sitting or lying around weakly 
.
I hope your clinical trial goes well, fingers crossed for a good outcome. Same for your sonâs exam results!
Iâm glad to hear you have good support around you with family and friends. We do too, thankfully. My parents stayed with the children as I was able to stay in the hospital with hubby while he had his treatment. The set up was very carer friendly.
Please do keep us posted on your clinical trial progress and how you are coping.
Take care.
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Good to hear that your Husband has been discharged. Please do share my post with him if it would help. The nausea will only go gradually (looking back, it took a month to resolve completely for me). His admission sounds rougher than mine. I didnât have any blood products but lots of IV fluids and IV antibiotics, as I spiked a fever, but they couldnât find a focus of infection, so they treated me anyway.
Exercise helped me massively in getting my energy back. Start slowly and increase very gradually. Initially, just coping with getting out of bed (I had a lot of dizziness for the first 4 - 6 weeks, which I am assured is completely normal - get up slowly and with support, it will resolve too). In the first few weeks, focus on eating and drinking well, putting weight back on and mobilising when he can. Indoor exercise (bike) was much more doable for me than a walk or run. I started weekly 5 K walks only in the last couple of weeks (flat, no incline), and itâs getting better as my energy improves.
I can understand your husbandâs frustration, as I was used to being very active. As my wife puts it, I need to be patient, as my body has had an almost complete reset after very powerful chemotherapy, so it will take time.
All the very best for your husbandâs recovery. Thank you for your wishes, hoping I get good results from the trial.
p.s. If your husband feels like talking to someone going through a similar experience, I am happy to share my number with you. I have a friend here who is undergoing treatment for Chronic lymphocytic leukaemia (CLL) and talking to him has helped both of us feel less alone with the illness.
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