[bigd]

Rare case of multiple myeloma causing paralysis

by bigd on Sat Jul 16, 2011 11:26 am

Hello there,

I am a regular reader of the Beacon, as my father was diagnosed about a year ago with multiple myeloma. He has had his ups and downs. He didn't respond at all to the Velcade, but he did respond to a combination of dex, Revlimid, Velcade, and Cytoxan (cyclophosphamide). He was told he had a very aggressive form linked to an abnormal chromosome, and a stem cell transplant was recommended.

He had the stem cell transplant, with very little to no side effects. He was doing really well for about two months when he got a lump on his head. He was still being observed by the stem cell transplant team and he raised this lump to them. Now he had a bone marrow check, which said he had a very good partial response. Now within weeks of this diagnosis, he was told his proteins levels were rising. Then about two weeks later he was told the myeloma was returning and the lump was probably a result of the myeloma. Which we thought was strange because the biopsy came back negative for cancer.

He began having back pains and within a week he had all the signs of a back lesion. He went in for a MRI and before the results were back he was in the ER. He began to lose feeling in his legs and within a week had no mobility at all in his legs. The doctors stated that he needed to have a thoracic laminectomy or he would not regain the use of his legs. He had this surgery a week ago and has not regain any feeling in his legs and the paralysis has now spread as far up as his arms and he had to be put on respirator because his breathing is labored.

The doctors stated they have never seen a case of myeloma return this fast or attack the spinal nervous system like this, and they don't know what to do to treat it. They stated he has swelling in his spine and they think it might be his body's response to the myeloma.

Has anyone heard of someone else suffering from this aggressive myeloma in their spine that causes paralysis? If you have, how/where were they treated and was it effective?

I would love this information so I can pass it along to my dad's doctors. We are currently desperate, as the doctors don't know how to treat him and how to move forward .

Thank you for your time and please include my father in your prayers as we need all the help we can get so he can get well.

[Snip]

Re: Rare case of multiple myeloma causing paralysis

by Snip on Sat Jul 16, 2011 12:44 pm

I was diagnosed with multiple myeloma last January, presenting with lesions at T9 and T12, both of which had significant bone structure loss (T12 was badly broken). It's a longish story but, in any event, the greatest concern the assembled doctors had at the time was the threat to my spine. They considered the lack of structural integrity of my bone structure a greater threat to my life and well-being at the time than the actual cancer itself. They solved it by getting me on dex immediatedly (that day) and by fast-tracking a round of radiation.

It worked. Much of the pain was gone immediately, and as of now my structural issues are being 'managed' adequately as we continue with treatment – finished chemo yesterday, and start the autologous stem cell transplant (ASCT) process early in August.

Obviously, you are dealing with a far more advanced situation than I am / was: your dad is already in medical intervention for this exact issue. I am so sorry he has such an aggressive case ... I hope for you that he pulls through soon.

[bigd]

Re: Rare case of multiple myeloma causing paralysis

by bigd on Sat Jul 16, 2011 1:07 pm

Hey, thanks for the reply. I think he had a shot of high-dose dex when he had the initial swelling of his spine. They wanted to give him a shot of dex directly into his spine. But they did not have the form of dex that could be injected directly into the spine because the preservative could be detrimental. I am not sure if they are still going to do it. I will speak to the doctors today and see if they are still giving him the high-dose dex. I think that they can't do radiation because it's too advanced for the radiation and that's why they did the back surgery.

I appreciate you well wishes.

[Ritz]

Re: Rare case of multiple myeloma causing paralysis

by Ritz on Sat Jul 16, 2011 4:24 pm

bigd,

Sorry that I can't help with an informed response, but I offer all the best to your dad. Keep strong, I think that will help your dad more than you may know.

[Dr. Edward Libby]

Re: Rare case of multiple myeloma causing paralysis

by Dr. Edward Libby on Mon Jul 18, 2011 10:34 am

Multiple myeloma can be extremely aggresive. This is especially true when it relapses. Some forms of myeloma are more notorious for aggressive behaviors such as patients with the cytogenetic finding of del(17p) (the P53 mutation) and those with plasma cell leukemia. I am very sorry to hear of your fathers illness.

[Ginny in SC]

Re: Rare case of multiple myeloma causing paralysis

by Ginny in SC on Wed Jul 20, 2011 7:10 pm

My fiance was diagnosed in May 2010 and has had a dual stem cell transplant with partial response. I don't have any experience with the type of thing that's going on with your father, but I wanted to let you know that you and your father are in my prayers. What an awful disease.

[NStewart]

Re: Rare case of multiple myeloma causing paralysis

by NStewart on Sat Jul 23, 2011 1:56 pm

As I was reading about your father's course of decline, I had 2 thoughts:

First, there is a very rare form of myeloma that enters the nervous system. extramedullary myeloma, also known as leptomeningeal myeloma. One of our support group member died of this recently. It is very aggressive and doesn't appear to have any good treatment. You might want to contact the Mayo Clinic in Minnesota and ask their myeloma specialists about this.

Second, this also is the way that Guillaume-Beret syndrome progresses. It is a virus that attacks the nervous system and comes on very quickly, starting with paralysis in the feet and legs and progressing upwards. In severe cases, the person ends up on a ventilator because of the paralysis. It also can begin to subside as quickly as it progresses, going top to bottom. Some people recover from it quickly and others are left with some level of dysfunction. Do you know if this has been considered as a possible diagnosis? Treatment is with plasmapheresis and intrathecal steroids.

I pray for your father's recovery.

[Penny]

Re: Rare case of multiple myeloma causing paralysis

by Penny on Sat Jul 25, 2015 10:25 pm

Hi bigd,

I have the same health issue with my dad. It has been 3 months of roller­coaster. My dad woke up one morning with no feeling in his legs, we took him to hospital and we started the treatment for the myeloma. 4th day in, he was infected by an infection straight to his brain, leaving us in ICU for 14 days with induced coma. They told me my dad was brain dead and he would not be able to talk again walk, or remember anything – pretty much vegie.

We turned off the machines ready to start the plans for the funeral. I went to see my dad on a Saturday 3rd day in after taking the machines, off and he spoke to me. 3 months in after fighting battles with doctors and hospitals, he is still here with us, remembers everything and everyone, BUT from waist down he is paralysed.

My family and I have been through so much, I wish i just had some answers and help from people to use for others to be cured as well. I wish no one would go through this in their life time.

Thank you for listening

[Penny]

Re: Rare case of multiple myeloma causing paralysis

by Penny on Sat Jul 25, 2015 10:34 pm

Hi Nancy,

I was reading what you wrote above, and I have to say this is exactly what has happened to my dad, from waist down with paralysis. At the start there was no movements at all, then he started with his right arm and now the left, but no signs of the legs.

I wish i had more answers from doctors, but they can't even tell me. Time is all I have and I have to wait and see, but I'm not giving up on my dad.

Thank you for listening.

[Ian]

Re: Rare case of multiple myeloma causing paralysis

by Ian on Sun Jul 26, 2015 7:48 am

Hello Penny,

I'm sorry to hear about your father's situation, but I think it's actually a good sign that he has come out of a coma and seems to have his memory intact and some of his paralysis has subsided. This means there may be a chance to do further treatment to get his myeloma under control.

The other positive thing is that your father was just recently diagnosed. That means he hasn't been treated with many of the different myeloma treatments that are out there, so there are probably more treatments that he is not resistant to.

As Nancy mentioned earlier, myeloma that appears outside the bone is known as extramedullary myeloma. Extramedullary myeloma can appear in many places throughout the body. When it appears in the certain membranes surrounding the spinal cord and the brain, it's known as leptomeningeal myeloma.

Unfortunately, patients who have extramedullary myeloma already at diagnosis typically have myeloma that is more difficult to treat. Your father's doctors will probably have to try a few different approaches to treating his disease to figure out what it will respond to.

There was a discussion here in the forum a few months ago about a case similar to your father's, and I think there is advice in it that could be helpful to you and your father's doctors:

https://myelomabeacon.org/forum/extramedullary-plasmacytomas-t5189.html

Also, I found this recent memo on the Internet that summarises a literature search someone had done about different approaches that can be taken to treat myeloma appearing in the spinal and brain membranes. Again, I think there is some advice there that could be helpful:

http://www.slideshare.net/MaxWhitney/leptomeningeal-myeloma

In a case such as your father's, it is particularly important that his treatment be guided by a myeloma specialist, who is more likely to have seen cases like this one simply because he/she sees many more myeloma cases than your typical haematologist-oncologist. If there is not a myeloma specialist among the team of doctors currently developing your father's treatment plan, it would be a good idea to ask the doctors whether they could consult with a specialist. Or, if it's an option, you could consider moving your father to a treatment centre where there is a myeloma specialist. We can help you find one if you let us know where you are located.

Best wishes,

Ian