[CarolsymonsParticipant]

I was employed at a school and was able to transition back to work both after initial treatment and after SCT. I worked 1 hour a day for a week, 2 hours daily next week etc etc., transitioning to full time in 6 weeks. I just met with the Head and she agreed this plan which was backed up by a doctor’s certificate. Surely it is disability discrimination if they force you out of your job?

Carol

[CarolsymonsParticipant]

Tm1960 try the Multiple Myeloma Australia Facebook page as there may be others there who can recommend specialists near to you who may be more helpful than the doctor you are seeing currently. You need an explanation for that level of pain.

Carol

[CarolsymonsParticipant]

Hi Dusk
I agree with you that treatment should be more tailored to the individual. In London I was only offered the standard CDT. I asked several times at Ealing a Hospital about my cytogenetics but never received an answer so don’t know if it was even done. I had found a trial using Velcade at University Hospital but the consultant at Ealing advised me against it. Fortunately I responded well to the CDT and went on to have an auto SCT. Before the SCT I was at no measurable paraprotein in blood or biopsy, but my lambda light chains and ratio were still out of normal range and rising during the wait for transplant. However after transplant the light chain ratio is normal…..so I am claiming stringent complete remission! Now 16 months later my blood test still shows no paraprotein and normal light chain ratio.

Some of the factors you outline influencing long term survival I feel are in my favour, as I was diagnosed early (broken collarbone but low lambda and paraprotein numbers, 25% cells in the biopsy) I responded well to treatment, achieved stringent complete remission and have no other existing health problems. So all in all I feel very fortunate.

Have just travelled to Bosnia from Australia, off to London to catch up with students and work colleagues on Tuesday and have booked a 2 week cruise out of Venice into the Black Sea in July. So…..retired and living life to the full while I can. Who knows what the future
holds for any one of us?

Carol

[CarolsymonsParticipant]

I have not been offered maintenance drugs after complete remission from transplant. First in London and now in Australia. I do enjoy being drug free though.

Carol

[CarolsymonsParticipant]

Post traumatic stress is a possibility after what we go through. I know I was very down about 6 months after transplant but have perked up now. Some people have seen counsellors, maybe that would help you? My family have been little help, I feel they all have their heads in the sand as I don’t look ill so therefore everything is back to normal in their eyes. I wish that I was back to normal but the treatment does take its toll.

Carol

[CarolsymonsParticipant]

From what I understand it is better to go into transplant with your numbers as low as possible if you hope for a long remission. No doubt they will put you on more cycles of treatment to beat those numbers down before transplant. I think it is better to do that than have the transplant and have a short remission. My free light chains also started rising between initial therapy and transplant but I am in complete remission 16 months after transplant.

Carol

[CarolsymonsParticipant]

If mum can avoid infections she will not be ill for a year after transplant…a couple of months and you recover.

Carol

[CarolsymonsParticipant]

Kefalonia is one of the islands my July cruise visits….hope I feel as well as you seem!

Carol

[CarolsymonsParticipant]

I don’t think the biopsy is that bad but I have to say I think it depends on who is doing it. I have had 2 with just a short weird sort of pain that ran down my leg, but the last one was a nightmare….she kept adding more local anaesthetic and went in a few times and still didn’t get a good sample….of course blamed my bones not her technique……so let’s hope you have a good operator and all will be fine!

Carol

[CarolsymonsParticipant]

Hi Richard

I do feel very fortunate to have reached a good remission after transplant and maintained it so far. No surfing for me, in fact nowadays I am very careful about going in if the surf is too rough. There is a salt water lake near here and mostly I swim there….no sharks there either…that’s a bonus!

I haven’t had Velcade yet but do have some numbness in my toes from thalidomide. Weirdly my toes feel worse after I have a shower….strange! But they are not painful so mostly I just ignore them and get on with living. Back to Europe in May for 3 months so looking forward to that. I feel I have to do everything I can now while the dreaded myeloma gremlins sleep.

I do hope your treatment is not too debilitating…your German should improve with the dex nights!

Carol

[CarolsymonsParticipant]

From what I read ONJ is usually triggered by an extraction which doesn’t heal. That is why the doctors advise you to have all dental work done before starting zometa. If mum needs any extractions or root canal work done I think they advise waiting another 3 months before starting the zometa as well. ONJ seems to be a particularly nasty thing to have so you are wise to be cautious.

Carol

[CarolsymonsParticipant]

Prunes seemed to help when I was on CDT….it was really annoying having constipation. For me the side effects of CDT were worse than the transplant!

Carol

[CarolsymonsParticipant]

Richard
What a darn nuisance! I went through transplant around the same time as you but was lucky to have and still maintain a complete remission nearly 15 months later. I do hope the new treatment is tolerable. You know some research seems to indicate that 20mg dex is as effective as the higher dose, but guess you have to listen to your specialist. I used to have a huge drop in blood pressure after the 4 days of dex during CDT and the doctor prescribed a “come down” dose for 3 days after which certainly helped both with the blood pressure and the aches and pains. I guess Velcade will be my next drug when the time comes and I am dreading it. Please don’t bite your daughter’s head off! I was evil on dex according to my husband!
I just thought I was telling it like it was!

Carol

[CarolsymonsParticipant]

Ali don’t stress, some people smoulder for years! I was working as a secondary SENCo in Southall, London when diagnosed. 2 years later I am heading towards 15 months post transplant in complete remission, retired, living a normal life back home in Surfer’s Paradise Australia. The most hopeful thing the consultant told me when I was diagnosed was to think of myeloma as a chronic disease like diabetes, rather than cancer. Who knows there may be a cure in our lifetime?

Carol

[CarolsymonsParticipant]

What a lovely way to celebrate Stephen’s birthday. He would have loved the flowers!

Carol

[Author]

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