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My husband Chris is 66. In 2011 he had Plasma Cytoma, which resulted in emergency surgery to remove the tumour, which included removing 3 vertebrae & replacing with (what we call) “scaffolding”. In september 2014 he was admitted to hospital with kidney failure.. all his blood test were good, no sign of para-protein. However, whilst in MAU his haematologist was not informed of his condition, even through Chris continually asked to see him. Needless to say when he DID see him in Jan 2015, he was appalled as Chris’s Light Chains were at 6800, & his kidney function at 19%. He also has Rheumatoid Arthritis! Velcade & Dex started in February, but the Light Chains were stubborn, so Thalidomide was added in June. At last count they were down to 420, which is brilliant. That’s the background, my problem is that, as a carer I am continually walking on egg shells. We have been married over 40 years & would (before this) have described him as a patient, laid back, active guy. He has lived with RA for over 10 years & has always looked at what he COULD rather than couldn’t do. Now he is sarcastic, quick to anger, rarely wants to see people.. except me; I understand that by late afternoon his back “lets him down”, ie it gradually compresses over the day so by 5/6pm he needs to lie down. Our lives are on hold, which is understandable. He attends for chemo twice a week & is about to begin his 8th round of chemo. I can’t see past the next few weeks – I am frightened for him & for us – I want to help & I don’t know how. His quality of life has deteriorated so much. It is such a disabling & painful illness & very unpredictable. We can’t plan anything….. Does anyone out there feel the same?
I am so soory to hear about ur husband Chris. i also had a Plasmacytoma, discovered whilst on holiday i. india. Needless to say I was hospitalised and then flown home for treatment. They wanted to operate on mine whilst in India, but I said no way. My daughtern the meantime did some research and found out more information. Spoke to a specialist here who said best way to treat this i. His opinion was byn intensive course of radiotherapy. At this stage myeloma was not dis overed. When i returned when straight into Addenbrooks Cambridge (whom my daughter spoke to) for immediate pain relief. During this 7 day stay myeloma was identified as the cause. Started 5 weeks daily radiotherapy (184 mile round trip each day) was totally zonked out. They got rid of the plasmacytoma and i began a round of CDT for 4 months. Have had no treatmen 14 months. My light chains were 367 to start with and went down to 34. They now up to 100 still no treatment. I would recommend a second opinion at a different hospital. I am shocked they operated without first doing a bone marrow test as a plasmacytoma is a sign of myeloma. Where abouts in the country do u live. Also your husbands moods are due to the medication. I was awful when i was on them. No real side effects but moody, tearful and tired. Believe me he will come through it and it will get better for you. Its not all doom and gloom although in the early stages it does seem like that. I wish you both well. PS i found the thalidomide the worse of the drugs.
Thanks Avril. Chris had to have the tumour removed as it was pressing on his spinal chord which would have severed it had he not had the op. He had radiotherapy following that & a bone marrow biopsy which showed very low light chains. He has then been tested every 3, then 6 months for MGUS etc & had no sign of Myloma for nearly 4 years, then here it is! Thanks for the reassurance that thalidomide is probably the cause…. I’ll post an update on Friday following his next visit to the Haematologist
Yes do post his progress. Also take heart its the drugs causing his mood swings , my husband and family all thought they were walking on eggshells when i was on treatment. They couldn’t do anything right but i got over it when i came off of CDT. Best to you and your husband.
My husband Ian was also very moody and impatient when he was on treatment. He also had surgery to remove a tumor which was compressing his spine, then radiotherapy. He was diagnosed in October 2012 and although we have not had an easy journey, his FLC are 16 following a SCT in May this year.
I used to go out for a walk or meet up with a friend for coffee to get some space when Ian was on dex.
Maureen x
Hello, my name is Chris also and was diagnosed with MM June 2014, by that time it had servealy damage lots of bones. My legs and spine in particular, I decided to go for the standard treatment which was CDT tablet form, so that was the chemo, steroids, and Thelidomide, my kappa light chain reduced to 64 from 1250. I then had a stem cell transplant March this year and at this time in what they call ” very good partial response ” and at present apart from pain relief I am drug free. The orthopedic are going to repair my spine in Sept, and the legs to be pinned in November ( might delay the legs because we want to go away for Christmas ). Yes it has been a complete life change for we had so many plans, I was active and could do most things having just retired at 60..some days I am so sorry for myself, other times frustrated. But also other times I am ok and still plan for holidays etc once I am fit enough.
so I really feel for you and your Husband Chris the fact that you have been married for those many years prove that you are both strong and understand each other. I am sure it is purely the illness why he is not his normal self, I can truly say how painful it is, then all the side effects of the drugs which again are not nice and cause mood swings. I sincerely hope that Chris manages to get through this stage, and like me gets to a point where he is drug free for a while then at least hopefully he will be more like his old self. Wishing you all the best, Take care CT.
Hi.
My husband has had MM for nearly 18 years now. He does get uptight and sometimes has a short fuse especially when on Dexamethazone. I have learnt to rely on my hobby, painting to emerse myself in something else not related to his myeloma/illness. I actually attend a painting group once a week throughout the year. This is me time and we arrange hospital appointments etcetera around this as best we can. My daily ‘me’ time is walking the dog, she listens to me inner thoughts and doesn’t try to change anything or shout back at me! Me time is essential for all carers to recharge those ‘batteries’ and start afresh each time. My husband is running out of treatment ideas now after having this horrible cancer for so long and we are both worried about the future. I do get fed up and like you say ‘ life is on hold’ but we try to get out and about as much as we can, even it is only out for lunch at the local pub. Please look after yourself as well and big hugs from me.
hy nickym intresting to read your post always think carers have a rough ride with this disease we fight the best we can but our loved ones bear the brunt of that fight. My husband plays golf when he can which relives the pressure of the everyday stuff iam a new MM sufferer only one year since sct and nearly two year since diagnoses your husband has n
done so well 18 years i am in awe i hope im as lucky as him. i never look at statistics about prognosis im not brave enough to do that. good luck hope something else will do the job for your husband for much longer. xx
Thankyou for all your replies. Things have deteriorated I’m afraid. After a week in hospital with a chest infection Chris began on Rivlimid followed by 40mg steroid. On this 2 weeks & rushed in with temp of 38.8. But his body has erupted in a massive angry rash… Everywhere! And I mean everywhere. They think it’s reaction to Rivlimid but not positive as yet. Also shadow on lung which we are hoping is only (!) the infection. Very scary & he’s very ill. However consultant talking about next steps when he’s out! At last count his light chain assay had jumped from 400 to 1800 in about 3 weeks!
Poor Chris. My husband had a very nasty rash with rivlamid. He has just started pomalidamide, same reaction. It looks as though they might restart reduce the dose and take an anti histamine. This new rash subsided within 24 hours after stopping pomalidamide (a derivative of rivlamid) anti histamines and steriod cream. Hope it rights itself soon. We will know more next Tuesday.
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