[treepot1]

Symptom free for 14 years after donor (allo) transplant

by treepot1 on Mon Jun 27, 2016 9:40 am

Hi,

This is the story of my husband, who I have been with now since I was 16, and the journey we have had.

When I met my husband he was a strong tall fit man, just what I was looking for, but I never would have imagined what lay ahead of me and him as a couple.

I had been with him for just under a year when I turned 17 and he started having severe back pain. The doctors put him on tablets, which were no help. Eventually he went for an x-ray in 1993, and lay in hospital on his back for 9 months.

They thought he had a cyst eating away at his lumber 4, so they treated him with radiotherapy and put steel screws into his back, and sent him home in a wheelchair with a body cast they had made for him to wear, where he remained in it for 2 and a half years.

Every 6 moths we would go back to the hospital to see if his bone had fused enough for him to be able to stand up again and not risk paralysis. I became his carer, even though I was young. I wanted to see this to the end.

After months and months of the same thing, I had enough finally when I wheeled him onto the beach determined to not let the sand stop us as a couple enjoying the sun. But no sooner had I pushed him onto the sand the wheels sunk. He is a big muscled man, all of 18 stone (252 pounds, 115 kg), 6 ft 2 in (1.88 m).

In the end, I went to the spinal surgeon and said "Do you even know what you are doing with my boyfriend or not?" He then put his hands on his head saying back to me "No, I do not."

With this response, I told the surgeon "I will find someone who knows what they are doing then."

I went to the library, as I had no computer, I found the number and hospital address of a professor, who dealt with orthopedic issues. I took my chance and wrote every week until he answered me. Finally he said he would see my boyfriend. After a visit to the hospital, he said to my boyfriend there is nothing wrong with your legs, get up. I could not believe it. All this time we had thought he would be paralyzed if he stood up.

He was then given a scan and it was found he had upper spinal lesions that where really tricky to fix again. With screws and bolts which where titanium this time, he fused a rib to the bone and made solid his upper back, but while doing this he did a biopsy to find that they where not cyst. They where in fact myeloma.

He was treated with radiotherapy again. At this point he was only in his early 20's, I was nearly 20 and worried about not having kids and everything else that this disease entailed. But shortly afterwards I fell pregnant, and we married for better or worse.

By the age of 23 I had my second son, and once again my husband started with shoulder pain.

He went to the doctors who gave him pain relievers, but they did not work, so he had an x ray only to find out he had multiple myeloma of the shoulder and pelvis. My children where under 5, how was I to cope? I look back and still do not no how we coped.

My husband had intense chemotherapy and then went to have a donor (allogeneic) bone marrow transplant, which his only brother was a match for him. Eight weeks he went from a once again strong fit man to a walking frail ill man. I do not know how he coped, but he did cope, I vowed that if he came out of hospital I would make every memory last, and all I wanted was my kids to know their dad. We decided to go away in the caravan as many times as we could, we went skiing and did things we never felt would be possible, He became self employed we bought our house, everything against the odds, watched football matches every week as my sons where keen footballers. We walked for miles as a family on long walks as my son was always hyperactive and walking made sense.

Now 15 years later my sons are 17 and 19 years old, and I never knew multiple myeloma was not a curable disease, only treatable, until these last few weeks that my husband has had leg pain, and I questioned the blood test because they have always said his bloods are ok. I only questioned it as they kept referring to proteins, etc, which I knew my husband had 15 years ago before it turned to myeloma. But even still I thought everyone had a bit of protein as we were always told the test where normal. so when I asked the nurse to explain she said they are not normal if it was in a healthy person. Obviously your husband has something going on and the blood had been like this for a while now, but low enough to be normal for him.

I have been non-stop searching the Internet. I feel like I was so naive to think it was gone for good.

My question is why do they wait for the levels to rise? Why cannot they find a preventative drug, when they know ultimately what happens to the kidneys, nervous system, etc, while the bloods rise to a level that causes harm and needs intense treatment. I am glad I found this site as it helps me feel I am not alone, which Is what it feels like sometimes.

Today my husband is having a bone biopsy on his vertebra to check that this is not the cause of his leg pain. I feel that everything you have to push for, he is asking for a scan also, as we do not think it is his vertebra, as he has no back pain even though the steel bolts have broken. I just do not want them missing something like last time.

I would have gone back to the hospital who fixed him and ultimately saved his life, but the professor has been long retired, so I am scared of the outcome now, to trust people who seem to just like to see how things go, is just not good enough.

I will just do like I did before – live with hope, and treasure the memories and hopefully beat the odds again. I will keep you posted as to what happens. It's hard, but it makes me realize how lucky we have been so far, from what I know now.

Good luck to everyone from Trish.

[cdnirene]

Re: Symptom free for 14 years after donor (allo) transplant

by cdnirene on Mon Jun 27, 2016 6:16 pm

Hi Trish,

Your husband needs to be seen by a hematologist, preferably one who specializes in multiple myeloma. Myeloma is such a rare disease and everyone's journey with this disease seems so unique that you really don't want a doctor with little experience with myeloma patients.

My myeloma was discovered when I went into renal failure. I started treatment, my kidneys recovered, and I am currently in remission.

There are a number of different multiple myeloma treatments today that weren't available when your husband was diagnosed.

[treepot1]

Re: Symptom free for 14 years after donor (allo) transplant

by treepot1 on Tue Jun 28, 2016 3:08 am

Hi Irene,

Thanks for replying. It feels so much better to know I can access people suffering with the same disease. I guess I was just shocked when I found out all about the cancer. I really thought it was gone for good until the last few weeks, and the more I read the more shocked I was to know all the complications with the disease.

I have just been to the hospital. They have gone in through the side of his stomach to reach the suspected diseased vertebra because of the leg pain he had. After waking from the anesthetic, he was in agony with his legs; he has had morphine and nerve blockers. I just hope they have not made it worse by doing this. Poor soul, he is suffering at the moment.

It's just so hard to remain positive, but I have to for the kids and for him. I am just so scared that I am older now and do not have the strength to pull him through whatever lies ahead. It's a lonely, dark place for us all sometimes when dealing with the unknown.

This morning he has had his breakfast, and the nurse said she is hoping to get him up walking later on, but through the night he had more morphine for the pain, so fingers crossed he will be ok.

Take care from Trish

[tpt]

Re: Symptom free for 14 years after donor (allo) transplant

by tpt on Thu Jun 30, 2016 11:59 am

Hi Trish,

You need to ensure that you're seeing a myeloma specialist.

I am no doctor, but here is some opinion based on my experience.

Myeloma does cause bone lesions, and eventually, if left untreated, these lesions will cause the vertebrae to collapse. The collapse triggers an immense pain, and it also disrupts the nerves, and hence may cause numbness, tingling sensation, or even partial paralysis.

My Dad was in your husband's position once.

If the myeloma is not treated, no matter what you do (radiotheraphy, etc), the bone lesions will flare up at different areas. You cannot walk with a collapsed vertebrae. I remember my Dad would shout and cry in agony to even move on his bed.

Thankfully with many current orthopedic techniques, collapsed vertebrae can be fixed in 2 hours (no joke). My dad had a procedure called kyphoplasty, which fills the collapsed vertebrae with cement-like material, with minimal incision. My Dad walked after a two-hour operation.

Morphine only blocks the pain but it does not fix the cause of it.

You need to make sure that you get him treated with anti-myeloma therapies by a myeloma specialist as soon as possible.

I wish your family well during this difficult journey.