[wallaceParticipant]

I am very sorry to hear of your pain, I was lucky enough to be diagnosed early and have very little bone damage. Having to wait and not knowing is awful, I remember that very well from presenting with kidney failure then the Cancer diagnosis was like a relief as we knew why they were failing and we could move forward. As Keven say, there is hope after diagnosis as the treatments are getting better, I am also still in remission since SCT in June 2007.

Best wishes, Mike.

[wallaceParticipant]

I would echo what Roger says, tell him how worried you are and ask to go in with him. There is far too much information for one person to remember particularly if that person is the patient, I struggle 12 years on!

Mike

[wallaceParticipant]

I was 41 when diagnosed in 2007, neither parent alive then to worry, you must be going through hell. Age is on his side for the recovery, was he diagnosed early?

Mike

[wallaceParticipant]

I felt similarly when diagnosed aged 41, had Chemo and a SCT on the Myeloma 9 Trial in 2007 so there is hope.

Mike

[wallaceParticipant]

I had my SCT June 2007 aged 42 and still in remission. I had a really bad case of mucositis from the Melphalan requiring a Morphine drip so from day one oral hygiene would be high on my list of recommendations. The anti sickness tablets were wonderful, I was not sick once. Low red cell count after treatment caused tiredness and shortness of breath so movement was impaired. Eating was a chore due to lack of appetite and the portions were minuscule, taste was affected too. Clinical depression was a problem as the return to fitness was slow with so many new experiences to overcome and deal with. Keep telling yourself things will day by day improve as they do even though it does not feel like it at the time. My NHS treatment and staff were and still are exemplary.

Best wishes, Mike.

[wallaceParticipant]

I presented with kidney failure due to Myeloma but was lucky enough not to need dialysis. Have his kidneys made any recovery?

Mike

[wallaceParticipant]

Hello Tony,

I well remember the roller coaster ride when first diagnosed just before I was 42 and one of the things we both say looking back is that searching the internet at the time for information gave us both more to worry about. I have recently turned 50 and I am still in remission after a stem cell transplant in June 2007, the treatments are improving and age is on the side of your wife particularly if it has been caught early.

Mike

[wallaceParticipant]

Have you contacted the hospital about your throat? I am 49, 7 years post SCT and if I feel a cold starting to take hold I get on to the Dr or hospital for treatment, the head consultant at St.Hellier told me to do this in order to prevent a cold progressing to pneumonia which I might not recover from.
You are not alone with being scared, I was and still have days where I worry. The harvest is fairly uneventful just tedious trying to lay still for so long and I was lucky enough to get most of it done in one day. The nasty bit for me was the effects from the Melphalan. I was told it would knock me for six like the previous chemo which I found was a walk in the park so thought they were just being cautious, but it really did knock me for six AND into the middle of next week!
I had very bad mucositis to the point where a morphine drip was administered for the pain. After 21 days in the Royal Marsden I was discharged with little to no energy and poor appetite, just taking a shower would leave me needing help to dry off and dress then I would need to rest for a couple of hours to recover. My energy and appetite returned slowly over the following weeks and within a couple of months I was feeling quite well. I had cinical depression too which was difficult to cope with but wore off eventually. Looking back I would say that had I been able to discuss some of my fears pre SCT with someone who had been through the same I would have coped better.

Mike

[wallaceParticipant]

Hello Nick,

I will be 50 next year and was diagnosed early due to kidney failure cause by the Myeloma, like your Mother I have little bone damage due to the early diagnosis and I am now entering year 8 of remission since my SCT. You are spot on with the treatments having vastly improved, 45 years ago it is doubtful I would have lived this long past diagnosis.

 

Mike

[wallaceParticipant]

Hello Denise,

I know little of Smouldering Myeloma, how often is your husband monitored?

 

Mike

[wallaceParticipant]

I had an ultrasound of my kidneys prior to Myeloma diagnosis as I presented with renal failure. Once diagnosed Haematology took over treatment and I am monitored by a joint Renal/Haemotology consultant alongside Haemotology.

As to the leg pain, the feeling I remember in my legs while on treatment I can only describe as having excess energy like I was on the start line ready to run and not able to get comfortable.

[wallaceParticipant]

Hello Don,

I like your sense of humour in the face of adversity, where are you being treated?

Mike

[wallaceParticipant]

Tony, I envy you; “can fall asleep at the drop of a hat”.  🙂

[wallaceParticipant]

I’m 49 with light chain over 7 years, SCT 2007 and still in remission. I hope you have been diagnosed early, where are you being treated?

Mike

[wallaceParticipant]

I was on the list for a kidney transplant preparing to have fistulas in my arms and weighing up the options of peritoneal dialysis when the Myeloma (Lambda Light Chain) was discovered. With treatment of the Myeloma the kidneys recovered to around 30% and have remained there for over seven years so far. I was your age when diagnosed.

Mike

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