[AlifaganParticipant]

Hello

My name is Alison and I am 52, I was diagnosed with MM last February after complaining of bone pain in my ribs for nearly 6 months, only on my fourth visit to the doctor did they decide to do blood tests which showed my high paraprotein levels.
I started 6 months of CTD and them had my SCT in November, I fully expected to go into remission so was upset to be told that I still had protein levels of 6 in my blood. Since then it seems to being staying stable and my levels are still only 8.5.
I have never really spoken with anyone else suffering with Myeloma, I feel good some days but still get really tired and have a lot of back pain even though the Myeloma is not doing anything and I am classed as in partial remission, I did have a small fracture in my back last year and some lesions in my skull but no other bone damage. I am still off work and feel as if I am waiting for something to happen even though I am always positive and push myself to stay as active as I can. Does anyone else have a similar story to share with me?

[tonyfParticipant]

Hi, in March 2012 the day before my wife and I were due to fly to Africa for a months safari my GP phoned to advise me not to go, a few days later at the haematology dept at Leicester Royal I was told I had myeloma. I have had no bone or kidney problems. I went onto the myeloma XI trials, and in early February 2013 had a stem cell transplant. At 100 days my pp,s were at 1.8. Although on the trials I opted for no maintenance drugs, wether that was right or wrong, who knows, but I was heartily sick and tired of taking drugs. Since then my pp,s have risen to 2.6 and stayed there. Since SCT we have travelled around the UK, been to Spain, San Fransisco, Hawaii. I walk the dog through the countryside every day, do bits of gardening and DIY and generally get on with it. I can fall asleep at the drop of a hat, sleep well at night. Bones and body feel a bit creaky from time to time, could be age!
Like you I’m in partial remission and thinking that something is going to happen, I get terrified about a week before clinic that they will give me bad news.
I guess that staying positive, laughing a lot, eat drink and be merry, enjoying my family, friends and life, are all important.
You are 52, this awful disease seems to be affecting younger and younger people, see other postings, please don’t give up, stay positive, you can beat this thing.
I am 70 in a few days time, we are having a big party, my kids are coming in from all over the world! then off to a clan gathering in Braemar. My ambition is to do it all over again when I’m 80. Haha, is that possible!
I guess everyone on this site has a tale to tell, I look forward to reading them.
Regards
Tony F

[AlifaganParticipant]

Hi Tony

Good to hear your positive story thank you for that, have a fantastic 70th birthday I will take your advise and live each day to the full.

Xx

[dickbParticipant]

Hi there, well, you’re a year older than me (hope you don’t think I’m rubbing it in) and in a similar position I believe. I too had an SCT in January this year and have not achieved total remission, in fact my IgG is at 22.5 and has been stable for the last 6 months. I was gutted when the medics told me my IgG level and they wanted me to have a tandem SCT but I refused. My reasoning was that it didn’t work first time so why should it work a second. Also I didn’t believe I was mentally tough enough to go through it again so soon after the first. They also didn’t try to argue against my reasoning.

We are now 6 months on, I have cut out the pain killers for the bone pain in my shoulders, I go for blood checks every month and they show everything is stable and so the attitude is to leave alone until it starts to get worse. I am still not working, the medics say I can do upto 6 hours a day but are very worried about infections so they advise I wait until my ‘T’ cells – whatever they are – have a count of over 200. I spent a few weeks in June at a rehabilitation clinic for blood cancer patients and they put a lot of emphasis on sport and physical activity. That I believe did help a lot and I do regular shoulder exercises – that’s were I have the most bone damage. I also met a chap, 54 years old who had had 2 Auto SCT’s and a donor one as well, Last year he took his motorcycle for a 6 week tour around S. America. He most certainly wasn’t feeling sorry for himself whilst waiting for God.

So, I think the moral of the story is, whilst we are in a position no one wants to be in, it is not the end of the world and we can be just as active and have as much of a fulfilling life as the others who have achieved total remission. As my Doctor said, it’s not about how long for us but quality of life.

[AlifaganParticipant]

Hi Richard,

Thanks for your reply it is good to hear from people with a similar story.
I had my transplant at Christies and they suggested a tandem transplant (donor) but none of my siblings were compatible and I too decided I didn’t want to go on the donor list and would leave alone.
I am not sure what IgG levels are, is the same as M band or paraprotein? If so mine are stable at around 8.5 and apart from back ache and still getting tired I feel good.
The 54 guy you met has certainly got the right idea, a positive attitude does go a long way.
Stay well and let me know how your getting on,

Regards

Alison

[dickbParticipant]

Hi Alison,

you will find your illness will be catergorised. e.g. I have Multiple Myeloma IgG Kappa. The IgG refers to the actual Immuglobulin that is affected. Some are IgM, others are IgA, IgG is the most common. The kappa refers to the Light chain that is affected. I still don’t understand it all and there are some good Oracles who use this site and will be able to tell you more. The plan for us is to attempt to have as normal life for as long as possible because we know it will come back and ultimately, it’s a battle I can’t win.

[donParticipant]

Hi Alison,
Hi Alison,

We are all different yet all in the same boat. My MM was diagnosed in November but I had a pulmonary embolism before treatment started. When I learned that 74% of my blood cells were cancerous, I thought the end was nigh. As I am almost eighty, SCT was not really an option.
Progress on VCD was slow and I was switched to Revlamid. However, it turned out that I had a separate cancer in my bowel. My MM treatment was put on hold and the tumour was removed two weeks ago. Tomorrow I meet the consultant to see if I restart the MM treatment.

What the future holds for each of us is anyone’s guess. All we can do is plough on regardless and use the forum to give our news, good or bad, and gain strength from the others who are striving to cope with the physical pains and the mental stresses.

Don

Best foot forward, Alison.

[mhnevillParticipant]

Hi Alison

As you have bone pain, are you on Zometa infusions? I swear mine have stopped me having any fractures from my many lesions.

Very best wishes.

Mavis

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