[shelagh1Participant]

Hi, my husband (49)was diagnosed with MM in September 2015. He had been in agony for 3 months getting treated for sciatica without blood tests or x-ray.  He was on morphine, and went downhill very fast and his kidneys were not functioning well when admitted to hospital.  MM was detected by blood test with high levels of calcium in his blood. He had a tiny liaison on a lower disc for which he received 5 fractions of radiotherapy. This stopped the pain.

The following week we began chemo. We have had 5 cycles of velcade, dex and thalidomide.  pp fell from 70 to 10. Kidneys are now back to normal.  We were put forward for SCT and had the meeting last week.  They said the hope was to get SCT once pp were as low as they could possibly go.

Consultant told us last week as pp has not budged since last time, he was going to take a bone marrow biopsy again and look to changing treatment. Treatment has stopped now as we were due to begin the 6th cycle this week.   We have been so worried since that meeting we had to call the Specialist Nurse.  She said that there are plenty options available and it was a case of riding the storm.

The whole experience is such a roller coaster. Initially the results were good but the last two cycles the pp level as been waivering between 9,12 and 10.   We look at the positives of pp levels falling from 70 to 10 but we left the meeting last week thinking that they were going to take the biopsy and come back and say that there is nothing more they can do, although our Specialist Nurse has said that she does not believe that to be the case.

It has also been mentioned to us that my husband’s genetics suggest that he is in the high risk category. It was explained in layman’s terms to us that after SCT, the disease may return quicker than we would like.  Has anyone else got experience of this?

I would love to hear from someone that could help us as sometimes it feels a very lonely place.

If I can help anyone with anything we have been through I would be happy to.  I get great comfort from reading other people’s stories and eventually plucked up courage to post our story.

 

 

[graemeandrewarthaParticipant]

Hi Shelagh,

Sorry to hear about your husband, makes it more difficult at a younger age.

I went through all stages and treatment before SCT. Sorry to say that I only got 10 months remission and now just finishing my 7th cycle of treatment again but will not be doing the SCT.

My main point is that with all medical procedures nothing is guaranteed. I have met men who have gone for years after SCT wheras I  got a short period of time.

You don’t say what the genetics are and if you are ok to mention it there may be others of the same to guide you a bit better. Whatever happens there are plenty of lovely people on this forum to offer guidance and experience.  Some you might not want to hear but believe me there is lots of helpful advice especially if he goes for SCT.

Hope that helps a bit, main thing is try to remain positive during this difficult time.

Regards, Graeme

[shelagh1Participant]

Hi Graeme

Sorry to hear about your situation too. 10 months remission is not long enough

I don’t have any more information about the genetics.  We were too scared to ask at the time. It was the Specialist Nurse who explained a little about what it meant.

As you say, we have to remain positive and not look too far ahead.

Thank you for trying to help me Graeme

Regards,  Shelagh

 

 

 

 

 

[davidainsdaleParticipant]

Hi Shelagh

Sorry to hear that you and your husband are having a rough time of it at present.

I started with MM in 2013 and it was about 8 months for me post diagnosis before i met anyone to talk to who had Myeloma, and as you say it can be a lonely place to be in. I too had similar back problems, unable to move for about six months. Luckily the radiotherapy and CTD worked wonders and now have a much improved quality of life.

You may remember the old BT advert on TV – it’s good to talk. I have found attending the patient information days organised by Myeloma UK particularly helpful. You can talk to other patients and the medical experts in a very informal way with no pressure on time. There are also local support groups which may be able to help. The staff on the MUK Helpline are always very supportive and well informed.

Although they say Myeloma is a very individual disease there are likely to others who have shared a similar journey.

Hope this helps.

David

[VickiParticipant]

Hello Sheelagh

I am sorry to hear of your current situation. My husband Colin had Myeloma. It was a real roller coaster of treatment but the SCT did give him nearly 18 months of remission. Please try to keep positive. I know how difficult it is for the supporter. I was that myself and felt very helpless at times however you have a really important part to play keeping the ship afloat as they say. The specialist nurses at the hospital are great so as has been said before, use them. Also the nurses here on the website are also a brat boost and Colin and I found great support and benefit from them. I can’t hide the fact that Colin passed away last August but the treatments are getting ever more effective so keep plodding on. We went through the whole journey sometimes with worry and sometimes with laughter!. Life our life if you both can and don’t let the myeloma rule it if that possible- we gave that a damn good try. if there is anything that I can help you with please don’t hesitate to contact me. Vicki

[shelagh1Participant]

Many thanks to both Vicki and David for responding to my post.

I may try the helpline for some advice.    Its also good to know that there are people on the forum who are listening.

 

Thanks everyone.

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