[meganjaneParticipant]

Hi Shelley,

Welcome to the forum. I think the reason there is such a lack of info on younger patients is because it is still usually older people who are diagnosed with MM and although many younger patients may have MGUS it may not be picked up due to lack of symptoms. When my husband Phil was diagnosed with MM in May 2012 at the age of 43 I had discounted this as a possibility due to his age. His GP also thought it was unlikely so the diagnosis took longer than it should have 🙁

In the UK the treatment for MM does not differ fundamentally between younger and older patients. The journey varies from patient to patient and treatment will be changed and adapted along the way depending on how some one responds and what, if any side effects develop. There are quite a few links on this website that describe the different treatment options:

http://www.myeloma.org.uk/information/how-is-myeloma-treated/

There is also the possibility to take part in clinical trials in some instances. My husband Phil took part in the PADIMAC trial which meant he had velcade as his first line treatment along with dex and doxorubicin.

I hope you get some of the answers you need at your hospital appointment.

Megan

[meganjaneParticipant]

Hi Richard,

Phil has neuropathy in his feet as well from the velcade. There are three different drugs in the UK that are often prescribed for neuropathy and although they didn't work for Phil they may work for you: amitriptyline, gabapentin or pregablin. We have also been told that Vitamin B complex can help. Phil finds that wearing socks to bed helps a bit.

Fingers crossed for a good BMB result.

Megan

[meganjaneParticipant]

Hi Jan,

It is so much to try and get your head round, isn't it? My husband Phil was diagnosed in May 2012 at the age of 43. He was part of the PADIMAC trial so had six cycles of dex-dox-velcade and then went on to have a SCT in December 2012. Soon after the initial diagnosis Phil had both femurs pinned due to the risk of fractures from the lytic lesions. Phil also had a stay in hospital with pneumonia.

Many people refer to the MM journey as a roller coaster and I think that describes it perfectly. None of us can know what is round the corner so they best way to cope is to live day by day while ensuring you gain as much knowledge as you can. I know the living one day at a time is difficult as my mind constantly wanders to future and many what if questions but I have come to realise that there is enough to worry about that is real without adding future worries to the equation. I have found counselling has helped me work through my emotions.

Phil now attends most of his appointments on his own as I work but I also send a list of questions each time, we are always learning new things. The good news is there is a lot of new treatment in the pipeline so there is hope.

Phil is doing well now, he has peripheral neuropathy that won't go away and pain from the bone damage but the difference between now and even a year ago is amazing, I hope things improve soon for Mike, it is good news that his FLC numbers have dropped 🙂

Megan

[meganjaneParticipant]

Hi Jeff,

My husband Phil has asked about kyphoplasty numerous times since he was diagnosed in May 2012 and has seen a specialist about it (a different doctor every time) at least four times but nothing has been done yet. We were told it may not restore the lost height but we were hopeful it would help with the constant pain. I think in Phil's case they may keep putting it off as although he does have pain quite often he has stopped taking any pain management medication so they do not classify the damage as too severe. The most recent doctor he saw seemed more inclined to recommend the procedure for him but Phil was told it might be too long now after the initial damage was done. It seems kyphoplasty only works if the tissue in/between(?) the vertebrae is still living, if the tissue is dead the kyphoplasty op will not help. Phil has now been for another MRI and needs to wait until January for his next appointment with this doctor to hear the outcome. He is trying to get an earlier appointment!

I am sorry this doesn't actually answer your question but I wanted you to know that you are not alone in struggling to get your doctors to consider this procedure.

Megan

[meganjaneParticipant]

Hi Ann,

Like Tony, Phil and I splashed out and bought the Braun thermometer and we have been very happy with it.

Megan

[meganjaneParticipant]

Hi Tom,

I have just checked with Phil and the answer from him is yes. Phil has ongoing back pain due to the damage to his vertebrae but today he also has rib pain again. The rib pain is what led to diagnosis and after treatment it disappeared for the most part but still flares up occasionally.

Megan

[meganjaneParticipant]

Hi Ann,

That is very confusing, you may want to call Ellen on the Myeloma Infoline to see if she can help at all? It may be a statistic that he is quoting but as we know the average numbers don't apply to individuals.

I suppose the main thing is to not focus on a hypothetical time frame and to just take one day at a time, get through the SCT, get yourself well again and then get on with enjoying life 🙂

Megan

[meganjaneParticipant]

Hi Ann,

My husband Phil has never really been given any sort of time frame for anything relating to his Myeloma but 12 to 18 months is often the time frame used to discuss recovery from the SCT. It is a major procedure and although everyone is different it is not something where you feel 100% a week later. Do you think this may be what he was referring to, recovery time instead of remission time? As with everything MM related there are never any definite answers.

My husband Phil had his SCT in December 2012 and he has recovered well, is in remission and feeling good.

Best wishes for a smooth transplant in November.

Megan

[meganjaneParticipant]

Hi Dai,

I am sorry to read about your recent stay in hospital (it is strange how high temperatures never seem to have a specific cause) but I am glad to hear your news about Pomalyst. Hopefully the Pomalyst will be kind to you with regards to side effects and it is wonderful news that it can be taken at home 🙂

Megan

[meganjaneParticipant]

Hi Jean,

Peripheral neuropathy is a nightmare, isn't it? My husband Phil had six cycles of velcade that has resulted in feet that are either numb or burning. Phil tried pregablin for a bit and although it did not work for him you may want to check with your doctor as I believe this is the next drug up from gabapentin.

Phil also finds wearing socks to bed helps a tiny bit.

Megan

[meganjaneParticipant]

Hi Scott,

I am glad to read your back is improving. My husband Phil had terrible back when he was a diagnosed and had the back spasms you describe a couple of times. Once was on the way up to stairs to bed, we were stuck halfway up the stairs for what felt like an eternity at the time. Phil found that his back steadily improved during the six cycles of treatment and now nine and a half months post SCT the pain is still there but not all the time and no where near as bad. He has seen various consultants about having kyphoplasty to help with the collapsed vertebrae but often when the appointment has actually come round it is during a good period for his back so nothing has been done yet. Phil is going for another MRI at the end of this month to see if the kyphoplasty might help to repair the damage.

Continue with your positive attitude, radiotherapy may not be the answer but there are other options you may be able to use in the future.

Megan

[meganjaneParticipant]

Hello Nancy,

During the last two cycles (5 and 6) of my husband Phil's treatment which was dex-dox-velcade the top of both of his legs swelled up. Various x-rays, scans and tests were done but no problem or explanation was found. The swelling finally went away during his stem cell transplant and has not returned.

Megan

[meganjaneParticipant]

Hi Eve,

I am sorry that I can't help answer your question but I just wanted to say I hope Slim is home now and that the blood test tomorrow shows improvement in his numbers.

Please keep us posted, you help so many of us on this forum I hope someone will pop in who knows the answer to your question. Were Ellen or Maggie on the infoline able to help at all?

Megan

[meganjaneParticipant]

Hi Eve,

You are definitely right!! I work to live and although I am very lucky that my job is only part time I do find it gets in the way of all the other things I would rather be doing 🙂

The simple things are what matter most and that is often what makes us happiest.

Megan

[meganjaneParticipant]

Hi Maureen,

You did an amazing job all those months combining work and visiting Ian at the hospital but it must be a relief to now know you can focus on yourself and Ian, it sounds like you have made the right choice.

Enjoy the slower pace of life 🙂

Megan

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