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Hello everyone – in November my husband was diagnosed with high risk smouldering myeloma and we were advised that it could progress in the next two years. And now it has. We have been advised that he will need to start DVDT treatment followed by stem cell transplant. Obviously there is a lot to get our heads round in terms of what this all means and we will read up on all of this and speak to the helplines etc. I have two main questions at the moment and grateful to hear from others who have experience of this:
1) We have a 17 year old son in first year of A-levels. Of course we will be telling him (when we get to the point of a specific date for treatment) but wondered if any of you have tips for telling teens and for how we/I can best support him over the next year or so as all of my husbands’ treatment will coincide with him doing his Alevels.
2) What can we do and can’t do during this time period. We know it will be over the next 9 months or so roughly and of course everyone’s experience differs. We were told early on to travel and so I booked a few trips for this year which will now of course be cancelled or postponed (thank goodness for the helpful guidance I got on this form regarding travel insurance). We now know that of course we cannot do any foreign travel. But what sorts of things can we do that can be nurturing and supportive and safe? For example can we go to concerts, book short breaks in UK between cycles if he is feeling up to it, spa days or other treats that might be helpful?
Thank you in advance – just want to do everything possible to help him. Other guidance advice from carers also appreciated.
Emma Sue
Hi Emma.
Like you my husband was diagnosed in October/November time. We have two girls 19 and 21. I don’t really have any tips other than be open with them about diagnosis and treatment .
With regards doing things during treatment we have found that a bit difficult, the treatment has been a bit tough at times leaving my husband quite fatigued. We have been able to travel to Scotland for day and have had a couple of nights away in motorhome however not much more than that as we are tied up 3 days of the week with bloods treatment and consultant appointments, spa days we have been told to avoid as the bacteria risk in hot tubs etc can be harmful during chemo , we have sort of settled ourselves to know that this year is pretty much on hold for us but have had dates for a stem cell transplant and have booked foreign holidays for March 25 as we have been advised that would be doable.
With regards to carer advice I’m just trying to do what he needs,sort out appointments and look after medication as he is terrible at that, and look out for any change in his health , checking for temperature etc and hold it all together as life still goes on with the kids etc.
I’m still working full time and I have to say there are times when I feel like doing everything is a bit much as obviously we did it all together before this. I feel guilty for complaining as I’m not the one who’s ill but sometimes it does get on top of you.
Hi Emma,
1. When I was more or less diagnosed (my consultant gave me meaningful looks and handed me a book from Myeloma UK, but the test results were not ready then), I didn’t know what on earth to tell my family. So I told them that it could be MGUS or MM, although I personally expected it to be MM. When that was confirmed, I told them all as much.
All my kids are in their twenties, but I was concerned most about the impact on the youngest, especially as he was at university. It was tough on all the family, but we got through it (and the youngest graduated successfully).
You know how your son will handle the news far better than I of course could, but I specifically recommend telling the school. They can keep an eye on him and take account of the situation with regard to A1 exams (not sure if they are still a thing 😀).
2. I hate being the bearer of bad news, but my experience (everyone is different) is that many of the items that you mention could be difficult for now.
Being immunocompromised can be challenging. Part of that challenge is being around lots of other people and their infections. Outdoor venues are good (especially with winter a long way off), meals out are good (keeping an eye on hygiene standards). Indoors, quieter venues (such as a half empty cinema) and/or wearing a mask is doable.
Breaks: short breaks in the UK sound good. A beach holiday would combine a change of scene (probably) and the chance to rest a lot.
It could also be a good time to plan ahead for when the treatment is over. There is nothing like things to look forward to when the going is tough!
Regards
Rabbit
I went through my DVTD treatment from November to February, followed by a 6 week break. Earlier this week I had my cells harvested and my transplant is booked for 30th April. I don’t have children so can’t answer your first question.
With regard to what you can and can’t do I think it will largely depend on how your husband responds to treatment, firstly in terms of how it makes him feel and, secondly, in terms of the extent to which he is immunocompromised. In my case, I had my chemo injections on Friday and felt fine Friday and Saturday because of the steroids given on those days. By Sunday I started to feel more tired and a bit shaky and Monday was my tired, lethargic day when I couldn’t be bothered to do anything. Then I started to pick up the rest of the week and feel pretty well. At no point did my blood counts that show vulnerability to infection (e.g neutrofils, white blood cells etc) fall below the normal ranges, even if they were a bit lower. They also give you antiviral tablets to take twice a day. So I didn’t consider myself to be particularly immunocompromised at that stage.
I continued with a lot of normal life. I used to go to the gym Monday, Wednesday and Friday but cut it to Wednesday because I was too tired Wednesday, and Friday clashed with my treatment. I continued to go to church every Sunday and play guitar in the band! I went out to cafes, restaurants and concerts, on the days when I felt well. I didn’t go on holiday, simply because I wanted to stay near my local hospital in case anything flared up. You will have instructions to contact them if various things happen, like temperature rises. But that only happened to me once. So you could probably get away with some breaks in this country if you let your haematology team know and ask who you would contact if there were problems. With regard to spa treatments you have to be a bit careful and the spa will want a note from your team to say you can have treatment. Detox treatments are no good while you are having chemo – you don’t want to flush the chemo out as you need it to work. Massages will depend on whether the myeloma has affected your bones. During my recent 6 week break from treatment I had a spa massage and my specialist haematology nurse sent me an email confirming it was OK. I would say take advice from your team, work out how your husband feels at different points in the week, plan your life around that and make the most of the good days, because there are plenty! All the best for the treatment. Glennis
PS. I should qualify everything I said above by adding that the situation will be very different after the stem cell transplant, when our immune systems are building themselves back up from scratch. So almost a lockdown situation for a while, then being very careful. But your team will advise.
Thank you for all the helpful advice – very much appreciated. We find out 1st May when treatment is likely to start….
Hi,
Thanks for all the responses- it is very interesting to read.
My partner was diagnosed in November after a long period of suspected ‘sciatica’ and immediately admitted to hospital for radiation and chemo. He’s just finished with the four months chemo and is now preparing for SCT in June.
We told our children straight away as, for us, and this will be so different for everyone, it seemed the only right thing to do. The youngest, who made the decision to only tell their best friends, is also doing exams at the moment. The decision not to share it widely worked well as school and social clubs remain ‘safe places’ where life continues as normal. I did the opposite and told everyone as I knew I would really benefit from the support. The two other children live away and although we keep them in the loop, we try and let them continue their lives as normal.
Regarding travel etc. This was, and is, not an option for us due to mobility issues but we have accepted that this is how it is at the moment. Physio is confident that walking will become easier and maybe even normal again, so we just adapted our lives around this. My partner’s blood values remained in the ‘normal range’ but we do our normal things. With the SCT coming nearer, we started taking more care in terms of washing hands, preparing food etc and so far, all good!! I am very concerned about the period after the SCT but our health team referred us to the eating guidelines from blood cancer UK which indicate that a ‘clean diet’ is no longer recommended. This reassured me and the tips on their site are useful. You can ask your team what they abide by and this should be helpful. I reckon we will go in a mild ‘lock down’ after the SCT: get food delivered, avoiding crowded places if not necessary (but we will keep going to school and work), extra care with washing hands, avoiding people if unwell, visitors outside etc. I also plan emailing school and ask them to inform us if there are any contagious illnesses are going around. It would be really useful to read what people dud during the ‘first 100 days’ to remain healthy!
Good luck… it’s a rubbish diagnosis and, despite being an optimist and usually very resilient, last week was the first week where I felt ‘sort of’ okay again!
We did however inform key adults involved, i.e. staff at school, sports coaches.
Hi,
My husband is due to finish his chemotherapy this week having had 4 cycles, he will have at least a month off & then around 27th Sept he will have the line put in, in readiness for the SCT & the harvest done on the 30th & transplant done around 3 weeks later providing a bed is available. The chemo has been tough as Glenc says he feels good on chemo day Thursday & good Fri & Sat & by Sunday rubbish. He too has mobility issues as he had a tumour removed from his spine in Dec due to myeloma, he struggles to walk & has had physio but with the treatment he finds it really hard to build his strength needed to walk, we’re not sure how much the op has affected his walking but hope after the chemo finishes he may gain more strength & improve before the next onslaught SCT. He’s not looking forward to it & to be honest neither am I, I do take comfort in the fact though that most people seem to accept that this is the best way forward in delaying this disease for a bit & maybe getting your life back into some semblance of normal but there is a lot to go through to get to the gain. We like every one else in the group hope that things go well & I know that I am going to have to be strong for him & our family. Is there anything anyone can say to make us feel this is really worth it?
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