[annParticipant]

Hi my husband has monthly zometa injections which started when he started chemo 6 months agao. This will continue now after chemo. We requested a change to zometa injections on the advise of a myeloma specialist a Christies where they had done research on it and showed the advantages of zometa in fighting mm.

[annParticipant]

We seem to share a number of things! In my case it is my husband who is the patient. He was diagnosed with SMM in '09 which eventually became active myeloma in March '11 he then started treatment and finished 6 months of CDT. He coped really well most of the time just 2 lots of infection earlier on. After we got our heads round the enormous number of tablets he took charge of his own treatment. I hope your Dad reacts in a similar way but it helps to have sympathetic support available when they need it and I'm sure you will be there to do that. I too have problems with a family member with personality diffs. in this case my mother who is 93 and can be very nasty and at times abusive. I have also tried to get her assessed and it was finally recognised that there were probs after she had to be hospitalised after a fall earlier on this year. Her depression was noted but not much else was done after she came out of hospital and settled in back in her sheltered housing. Just hope your Dad can get the support he needs when he needs it from you or Macmillen and that your Mum doesn't cause too much stress.

[annParticipant]

Hello Jane your mum and my husband (age 72) seem to be going through the same thing. David had smouldering MM for over a year but in March was told it was active and started chemo. He started cdt in March and is just completing his 4th cycle but we will probably go on to 6 cycles.
I cant seem to manage to start a discussion on this site and wanted to know if anyone is going through the same thing. Its so isolating on your own! Generally he has managed well but on 2 occasions he has had infections and needed antibiotics that is scary. The rest of the time hes not too bad although hes like hes on batteries with dex! He copes with the constipation with movicol which works fine. Has your Mums paraproteins gone down? We found that they went up when he had an infection. Has anyone else found that? Good wishes to you and your Mum in coping with this difficult disease Ann x

[annParticipant]

So would I! Tried several times to give details but told that my email already exists! Help! Ann

[annParticipant]

Hello Renee and Chrissie.
Renee the shock of diagnosis is so hard you just cant believe that it is true. It does sink in eventually as you are probably finding. Everyone deals with it differently. I wanted to find out everything I could about mm till it became almost obsessive!My husband (71) started CDT in March so hes on his 4th cycle. He has been ok with eating etc the only problem is infections. Has anyone else experienced this whilst on chemo? He is recovering from the 2nd bout of infection. It makes him go downhill really quickly and is very scary for me seeing him like this. Both times it has meant a rush to hospital for antibiotics. We do keep a close eye on his temp all the time but I find it very difficult. There is only the 2 of us (families live a long way away) and I find it rather overwhelming when trying to judge when to seek help. The infection also seems to affect the pps which went up last time. We have now been told that he will be having another 2 cycles of CDT.David was a fit farmer and it so hard to see him feeling so weak and low with this infection. It does help to hear of others going through similar experiences. Best wishes Ann

[annParticipant]

What an uplifting video Jet. Cheered us both up and gave us hope. Thanks for finding it from us! Shows that there is room for optimism for the future. Ann

[annParticipant]

Hi Vicky. Sorry you have been through such a difficult time and hope your Dad is feeling more hopeful now. I support my husband who started cdt in March and is now on his 4th cycle of 6. Things are going fine apart from 2 lots of infections needing antibiotics. This seems to effect the paraprotein level. They had gone from 35 to 4.5 the 1st time but went up to 28. They have reduced again but no doubt will go up again with this round of antibiotics! A roller coaster is a good way to describe what you go through. David, who is 72 next week, is a retired farmer I believe myeloma is found in agricultural workers.
I know the expectancy information can be frightening but it is a median figure and so muchappears to be happening in new treatments to prolong life expectancy.Hope the chemo goes well.

[annParticipant]

Hello Marian we are in such a similar position! In fact I have been trying to post on this site but when I try to register it says there is already my email address on the site! I'll contact muk in the morning. Anyway my husband is nearly 72 diagnosed with smouldering mm in Dec.09 but active mm in March.11 We weren't given the chance of the trial (in fact our hos. didn't seem to know about it) even though we asked about it at the time. However he is just starting his 4th cycle of cdt (standard treatment) and we will probably go on to 6 cycles. It has gone well with only minimal effect such as a bit of shaking, manic energy on steroids and constipation with thalidomide
We were worried after the 1st cycle as the paraprotein had gone down to 4.5 from 35.5 but he got an infection and had to go in overnight for antibiotics and was told to stop the 1st drug for a week. The paras then went up to 28! However the latest tests show 17.6 pp so things seem back on track. Think this blip was due to the infection.
Hope this is helpful to you it does take a long time to get your head round all the terms etc. Good luck to your Dad so glad your Dad has you all around him. Davids family live quite a long way away and my family is abroad but we have good support from friends.

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