[CarolsymonsParticipant]

Hi Tina
We all fear this same situation of early relapse so I think it is difficult for us to deal with another’s relapse. I guess you just have yo be there as a friend and listen to her fears. Many people suggest counselling and maybe that could be something that would help. I know if I were in the same situation I would be very anxious. Every 6 weeks before I see the specialist I fear that my myeloma has returned…it is nerve wracking.

Carol

[CarolsymonsParticipant]

Hi Keith
I guess because my paraprotein was quite low but my lambda light chains were raised they were mentioned at diagnosis. I had the standard initial treatment with CDT and while my paraprotein dropped quickly, my lambda light chains were slower and immediately started rising when CDT finished and I was waiting for transplant. Even now while my paraprotein is undetectable my lambda light chains have already crept up to 36. Not enough to be considered out of remission but still worrying. However my kappa/lambda ratio is still normal. Keith maybe light chains weren’t a problem with your type of myeloma?

Carol

[CarolsymonsParticipant]

Hi
It is common now in the US for patients to go through the transplant as outpatients. The doctors should be checking your mum’s blood every day and after 5 or 6 days her neutrophils will fall to zero which is when she is at great risk of infection. A few days later if the stem cells are working her neutrophils will rise and she will start to recover. Usually you get vomiting and diarrhoea from the chemotherapy they give you before transplant so she will be ill for a few weeks. You must check her temperature several times a day and go to the hospital if it rises as she could have an infection. This is very important. Once her neutrophils rise again she still is at risk of infection but not so much. I did stay home for the first few weeks after transplant to avoid infections.

Carol

[CarolsymonsParticipant]

Hi Katy
I was lucky my collarbone collapsed as it gave me an early diagnosis. In fact without the bone damage I would have just been on watch and wait. My paraprotein was 10 but rose to 18.4 as I delayed initial chemo treatment while undergoing radiotherapy of my collarbone. I have iga lambda myeloma and my lambda light chains were 526 (5.7 to 26.3 is normal). Light chain ratio was 0.02 and only reached normal level after transplant. Also I only had 25% cells in my bone marrow, less than 1% before transplant and undetectable at the 100 day check after transplant. So all in all I have definitely been one of the lucky ones. Healthy beforehand, early diagnosis, low numbers, excellent response to initial treatment and transplant and so far still in stringent complete remission. I don’t know my cytogenetic profile, so or even if it was done when I was diagnosed in London, but perhaps ignorance is bliss. If I knew I were high risk, I think I would be far more anxious about the future than I am now.

Sending positive thoughts to your mum.

Carol

[CarolsymonsParticipant]

Hi Keith
Yes still on tests in Oz and monthly parmidronate. Just been moved to 6 weekly checks (next one on Thursday) but hoping to go to 3 monthly as I want to spend at least 3 months travelling in Europe this year if still in remission. If all clear next week then booking a cruise to Fiji, New Guinea or New Zealand….depending on availability. So all in all life is good!

Katy keep your mum positive…I truly believe that helped me. I went into every treatment believing it would work and luckily it did.

Carol

[CarolsymonsParticipant]

Katy I was 63 at diagnosis and like Keith, less than a year later had had my transplant in London and am approaching my first year in complete remission next week. I am back home in Australia, living life to the full so please don’t despair for your mum. The specialist in London told me to think of myeloma more as a chronic disease nowadays, rather than incurable and I think that helped me remain positive through the treatment. I can’t say the treatment was easy…it wasn’t, but I recovered well after transplant with no infections. If your mum is healthy now then I think that also helps towards a positive outcome. I do hope her back pain is unrelated. For me the myeloma gremlins ate my collarbone which led to diagnosis, but this is unusual. Be strong for your mum, she will need you.

Carol

[CarolsymonsParticipant]

I blame all new symptoms on the treatment, cos then I don’t have to admit maybe it is to do with growing older…..65 now!

Carol

[CarolsymonsParticipant]

I know in America they use revlimid for maintenance but not thalidomide. I had thalidomide for my initial therapy and it worked, but left me with neuropathy. Also, as it is a sedative take it about an hour before bedtime. Are they offering it to you because you are not in complete remission? I was never offered any maintenance while in a London, but did achieve stringent complete remission after SCT. Almost 1 year now so doing well.
Carol

[CarolsymonsParticipant]

Not whistling but tinnitus in one ear and my hearing has definitely got worse.

Carol

[CarolsymonsParticipant]

Hi Phil
This reply may be too late for you but I had etoposide at Hammersmith Hospital London before my stem cell collection. I am now almost 1 year in stringent complete remission so the etoposide was successful for me. The etoposide made me neutropenic as expected but I don’t remember any more serious side effects although I did lose patches of hair after it.

Carol

[CarolsymonsParticipant]

Hi

Black Swan

Another collarbone diagnosis, the only one I have heard of apart from mine! My collarbone too just went as I was alighting from a bath, although I must admit it had been a bit sore for about 3 months. In A&E they also wanted to send me home with a sling for 6 weeks as the X-ray didn’t actually show a break. However I had a huge swelling on the collarbone and basically kept insisting something more was wrong. I cannot believe that A&E doctors are not more aware that a pathological fracture (no impact etc etc) should always be investigated. So….after a lot of assertive discussion on my part luckily I was admitted and diagnosed with Iga lambda myeloma a week or so later after all the usual blood tests, X-rays, CT scans and biopsy. Otherwise I would have been like you, sitting around for 6 weeks with the myeloma active. I was also fit and healthy on diagnosis so it was a huge shock. I am now more than 7 months post transplant and in complete remission thank goodness. I too did a Baltic cruise in July with Oceania cruises spending 3 days in St Petersburg which was great, although I did pick up a cough somewhere on the cruise which is still troubling me.

[CarolsymonsParticipant]

Hi Emma

Hi Emma

3 months after SCT I was able to return to work (inner London high school…NOT classroom based) on a phased return with the expectation stated clearly by the Head that I was to be full time (6 1/2 hours daily) within 6 weeks. Fortunately I was able to manage that within the time scale. Through the initial treatment I was off work (dissolved collarbone) but returned on a phased return also while waiting for transplant. Over the 18 months since diagnosis I have used 10 1/2 months of sick pay (9 months full and rest half pay. I have to say my Head was co-operative during this time. I did check with the union about the 6 week deadline for the phased return, but they said there were no clear guidelines. Surely at your young age your employer could be accused of disability discrimination? Fight this cruel decision with whatever strength you have left during your battle with the “myeloma” gremlins. As you say you will probable be around for many more years. Would they begin this process with someone who was absent with diabetes? I don’t think so.

[CarolsymonsParticipant]

Robert and Martin may you both smoulder for a long time cos treatment can be quite debilitating. I am now just past 7 months after stem cell transplant and in complete remission. People on here talk of the “new normal” and I am certainly not back to how I was before diagnosis. So, do whatever you can to smoulder for as long as possible would be my advice.

Carol

[CarolsymonsParticipant]

Thanks Richard

Yes my agent assures me all will be well. I will just leave him with the keys in case this existing offer doesn’t eventuate and the property needs to be re- marketed. I can’t wait to be back home with friends and family and swimming in the gorgeous blue Pacific Ocean at Surfer’s Paradise, Queensland where I will live. I have read that people say if you are tired of London, you are tired of life! But after 8 years here, although I have enjoyed London and all it has to offer, I cannot wait to escape! And no I am not tired of life (whatever is left of it)

Carol

[CarolsymonsParticipant]

What a fantastic result!

Carol

[Author]

Posts