[Anonymous]

Dear starfish10
I registered with the site yesterday and your comments almost mirrored mine word for word with regards the awful symptoms. My husband was diagnosed 5 weeks ago and the pain that he is in has been truly awful. I just wanted to say that I hope your husband has improved since you put your original post and you are navigating your way round the system. It really helps me to know that other people are going through similar experiences and reading other comments gives me some hope that things might get better.

[suehinton2018Participant]

Hi all
We have been on our journey for 2 years now. My husband Dave was diagnosed then with stage 3 active myeloma just 6 months after we married.
It has been a roller coast ever since.
In March during lockdown he had his STC which did not work. Levels climbed straight away, on to DVD after 3 cycles levels still climbing!
We have now stated IRD, just half way through 2nd cycle.
He is not well, looks grey, breathless, no energy but won’t tell our family or friends. Only I see the true situation and it is more than I can bear. I’m trying to teach from home after having taken unpaid leave and it is really hard. I feel I can’t talk to anyone. I don’t want to burden any of our friends especially as he wants to be positive all the time! Lockdow n isn’t helping.
We have 6 adult kids 4 are his they know very little of the true scenario. They are aware he is in the treatment but don’t know how far along our journey we could be. My 2 kids know a little more but again I don’t want to burden them with the truth to support me when they can’t be open with Dave about it! Any suggestions??? Any hope??

[thespiderParticipant]

Hi there. I was so sorry to read your post, I do know exactly how you are feeling. My husband was diagnosed October 2019 after suffering for quite some time before they made the diagnosis. He also has Amyloidosis, an associated condition that some can get.

My husband was in hospital, terribly ill, from January to March 2020. The consultant, not any of his family, believed he was going to come home. However, he did and, apart from some mobility issues which is because of the Amyloids affecting the nerve endings in his legs, he is feeling quite well. He does get tired and is on various medications but generally he is quite OK. At present he is not on chemotherapy and his readings are, in the consultant’s words ‘relatively stable’. Obviously, at the moment, we are not doing very much at all but that is more due to lockdown than his condition.

My husband is a very positive person (much more so than me) and when he was first diagnosed, he was very positive and upbeat whereas I completely fell apart! He, like your husband, wouldn’t tell his family (he has 3 grown up sons) the whole truth and I felt I had to burden it myself. I struggled!! I eventually spoke to my GP who referred me (actually I could self refer), to a counselling service called We Hear You. I’m not sure if this particular service is just for people in our area but I am sure there must be other services like it. I was very dubious about speaking to a stranger about everything but I have to say, I don’t think I would have got through the first few months without ‘Kate’ my counsellor – she was an absolute diamond. I still have wobbly days but try to stay as positive as my husband.

My best friend also has Myeloma would you believe and, she too was very poorly at the start. She is now not having any treatment and is in remission.

So there is always hope. They are constantly bringing new treatments out and I was told at the beginning, out of all the cancers, Myeloma has the most research and new treatments coming out.

Please, please get someone to talk to. It doesn’t have to be someone you know. As your GP to be referred to a Counsellor. You will be surprised I think how much it helps.

Finally, this Forum is always here so anytime you want to ‘vent’, this is a good place to come also.

Take care of yourself.

The Spider

[jedParticipant]

Hi ,
Am new on here .
My husband is 62 and has just been diagnosed with Myeloma! To say i am scared , is a bit of an understatement. He has had a “ bad back “ for about 3 months and slowly been struggling with pain in his ribs , he can no longer sleep on right side and has constant discomfort and now awful pain in his back and ribcage . We got the diagnosis on tuesday 18th jan and he was then given a bone marrow test and also ecg . His calcium levels were high so he was given a 15 min infusion to help his body deal with extra calcium? Plus 4 days on dextramethasome We have not yet had any mri scan , ct scan is booked for this week. Today i have had to call an ambulance to have my husband taken into A&E as he could no longer cope with the pain ( pain relief was 50mg tramidol and paracetamol) 4 x daily . He was coping quite ok but suddenly things have changed , couldnt sit, stand , walk without crying out in severe pain, difficulty in sleeping etc . I am scared! Is this normal ? I believe Starfish also experienced a similar situation any tips or hints i would grateful
Many thanks

[lilibParticipant]

Hello Jed,

I am very sorry to hear about your husband’s diagnosis. It seems to have come about in a very similar way to my husband. When he was diagnosed last July, I was internally in a full-blown panic, but tried to keep a lid on it for his sake. He was in so much pain that he could barely walk to the car, and when I had to drop him off at the hospital for treatment, it would take him about 15 minutes to walk from the entrance to where the clinic was along yards of corridor. I wasn’t allowed to go with him. I really thought he would never be able to drive again (and he recently told me that he had thought that, too.)

Anyway, once the treatment cycles began, he was able to be a lot more mobile. Improvement started after about the third cycle, and he now drives himself to the hospital most of the time, and we go out for a shortish walk most days – we did a mile today, but that’s not always possible.

The consultants are talking about a Stem Cell Transplant for him in a few months time, and I have to say that the Nurse Specialists and the consultants have been brilliant. There were teething problems at the beginning with the treatment, but it’s a very individual condition, and some medications suit some people and not others, so there is often a bit of trial and error initially.

I hope that your husband will be given adequate pain relief for the initial stages, and that you will be able to relax a bit yourself with the demands placed on you as the carer.

All the very best,

Lili

• This reply was modified 2 years, 9 months ago by  lilib.

[kh0305Moderator]

Hi Jed,
I’m a volunteer on the discussion forum and just saw your post. I hope both you and your husband are in a better place mentally and physically than at the end of January.
My dad was also 62 when he was diagnosed and experienced many of the same problems you mention in your post, including going from a niggling pain in his ribs to seemingly suddenly contracting pneumonia and being in severe pain and being admitted to hospital (I believe it was him catching pneumonia that ended up getting him a diagnosis of myeloma as early as he did). He also subsequently ended up back in hospital in huge pain despite having been deemed well enough to be discharged previously. Hopefully your husband has had his scans by now and you know the extent of the bone damage and a treatment plan. It is all a bit of a whirlwind at first with the treatments and drugs, but it does get easier and you fall into a routine. It took a good couple of months for dad’s severe pain to get under control but it does get easier with time. The zometa infusions did a fabulous job for dad and since recovery from his SCT he suffered no real bone pain during his 7 years remission. Unfortunately his bone pain returned in late 2020 but we at least knew what it was this time and used it to push his doctor to get him back into active treatment, though with covid this did take a few months! It probably took dad from diagnosis to getting back to some sort of normality around 18months in total. He was feeling much better before the 18 month point but did struggle with fatigue so took a while to be able to get back to getting up to normal walking speeds/distances and not having to nap during the day.
I hope this helps to give you some reassurance that things will improve. It is hard at first but ask as many questions as you can of his medical team and there is a lot of information on this site that I found helpful and reassuring too. Good luck with everything! x

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