[redhawk1974]

Cryosurgery for multiple myeloma?

by redhawk1974 on Thu Dec 03, 2015 3:45 pm

Hello everyone,

We are looking for some information. My father, age 70, has stage two multiple myeloma and has been doing chemo. It has helped some but not too much it would seem. They are sending him to another hospital to have cryosurgery and will be in a sealed environment for 30 to 40 days.

I can find no information on cryosurgery for multiple myeloma at all and doctors only say it is the best next thing they can do for him. No one has discussed stem cell transplants or even bone marrow transplants.

While I stay positive, I am the type of person who would rather have the facts as to be prepared one way or another and not waste time. It is annoying when the only things doctors will say is people die with this disease and not from it. I know they do not like giving out bad news and I know people always react different to procedures and nothing is set in stone, but some real world averages and such would be nice to have. I hate being in the dark.

Staying positive regardless but really hate not having information. Thanks for any info and advice you can share.

[Multibilly]

Re: Cryosurgery for multiple myeloma?

by Multibilly on Thu Dec 03, 2015 4:10 pm

Hi Redhawk,

What hospital is recommending that your dad proceed with cryosurgery?

Is he suffering from an extramedullary plasmacytoma (a myeloma tumor that is in one's soft tissue) or does he have an especially painful bone lesion? I'm not a doc, but I have a hard time believing that cryosurgery would be used to treat anything more than a localized tumor in a multiple myeloma patient (just like radiation treatments are sometimes used on specific, problematic tumors with multiple myeloma patients). But be clear that I've never even heard of cryosurgery being used under these specific circumstances and I certainly can't imagine cryosurgery being used as a general treatment for multiple myeloma in lieu of drug treatments or a transplant.

But again, I'm not a doc and maybe somebody else on this forum has heard of cryosurgery being used with multiple myeloma patients.

In any case, I might suggest a second opinion from a top myeloma specialist. If you let us know what city your dad is in, folks on the forum can make some recommendations as to where to find these specialists.

[Jonah]

Re: Cryosurgery for multiple myeloma?

by Jonah on Thu Dec 03, 2015 4:52 pm

Hi Redhawk,

Welcome to the forum.

Multibilly has given you some helpful advice. I just wanted to follow-up briefly and ask whether you are sure that it is cryosurgery that they are recommending for your father. There are a lot of different procedures that can be carried out on myeloma patients, and they often have unusual names, so I'm just wondering if perhaps you heard something that sounded like cryosurgery, but perhaps it actually was something else.

For example, "cryotherapy" (basically ice cubes) is used to prevent mouth sores during a stem cell transplant. Also, "kyphoplasty" is a procedure used to reduce back pain in myeloma patients.

What REALLY is confusing me is when you say that your father will have to be in a sealed environment for 30-40 days. That makes me wonder if they are planning to have him do some sort of stem cell transplant -- for example, a donor stem cell transplant, or perhaps an autologous stem cell transplant combined with some sort of experimental therapy (CAR T-cell therapy?)

[redhawk1974]

Re: Cryosurgery for multiple myeloma?

by redhawk1974 on Thu Dec 03, 2015 6:14 pm

Thanks for the reply. In non-scientific terms, they are putting him in an isolated, germ-free room for 40 days. He has two tumors in his right femur. They are somehow taking bone marrow out, freezing it, and then putting it back along with chemo treatments. It is not a transplant as we thought that was what they meant at first.

He has been taking chemo treatments once a week along with a couple of medicines. I don't have names with me but one is a blood thinner as he had gotten a blood clot once and not sure on the other one right off. As far as hospital goes, he will be at WVU. It just all seems strange to me.

[Jonah]

Re: Cryosurgery for multiple myeloma?

by Jonah on Fri Dec 04, 2015 11:48 am

Redhawk,

What you've described sounds a lot like an autologous stem cell transplant. The autologous transplant process involves steps like:

1. Harvesting of a patient's stem cells (from the bone marrow or, more typically, from the blood)
2. Storing the stem cells in a deeply frozen state
3. Treating the patient with high-dose chemotherapy
4. Unfreezing the stem cells and re-infusing them into the patient several days after the chemo

An "autologous" transplant isn't a transplant in the traditional sense, in that the patient is not getting cells or an organ from someone else. The cells they are getting are their own.

Also, the part of the process that is really a treatment is the high-dose chemotherapy. The reinfusion of the stem cells is done to help the patient's bone marrow recover from chemotherapy.

People who do a stem cell transplant in the hospital as an inpatient usually stay for at least two weeks, but it's not unusual for it to take 3, 4, or even 5 weeks.

[Multibilly]

Re: Cryosurgery for multiple myeloma?

by Multibilly on Fri Dec 04, 2015 12:16 pm

Hi Redhawk,

I think Jonah has it right, as usual. It is indeed confusing to many that an autologous transplant is called a "transplant" at all. The thing to remember with an autologous transplant is that the high dose chemo is actually the treatment and not the "transplant" itself.

[redhawk1974]

Re: Cryosurgery for multiple myeloma?

by redhawk1974 on Fri Dec 11, 2015 12:50 pm

Thank you everyone for replies. We finally got more info. It is indeed a stem cell transplant. or rather taking his out and then putting back in.

He goes on December 21 and 22 to see if he is a candidate, or or at least I think that's what they are doing. Then they have him coming back January 1st and he will be there until February 10 at least.

Does anyone know what the success rates would be for this at age 70?

I know most people pass away from other things with this disease do to weakened immune system, and his is already pretty shot. No illness like flu or anything, but he keeps getting MRSA outbreaks in different locations and they stop treatment and start antibiotics for it then resume.

He also developed a raised soft spot on his head. It's not a bump or pimple or anything like that. You can see it and feel it, but looks like a knot. They took X ray but not got results back yet. Could this be related in anyway? Can tumors from this kind of cancer spread?

Thanks again for the info and advice it is appreciated.

[NStewart]

Re: Cryosurgery for multiple myeloma?

by NStewart on Fri Dec 11, 2015 5:36 pm

Continue to get more detail on the procedures that your father is going to be having. The visits on Dec. 21 - 22 most likely are for a hospital admission for a Cytoxan infusion which often is the first step in getting ready for stem cell harvesting. Or, if he has already done that it may be for the harvesting of the stem cells themselves since he is scheduled to be admitted on Jan 1 for the transplant. Often that is done about a week to 10 days post harvesting. The transplant centers usually tell patients that they will be in the hospital for the transplant for a minimum of a month just in case there are complications. I was in the hospital for 17 days from the date of the infusiion of melphalan which is the part of the transplant that wipes out your bone marrow. The re-infusion of my stem cells was 2 days later.

The only time that I was sort of in isolation was the few days when my blood levels dropped to 0. Then anyone who came into my room had to wear a mask, gloves and a gown. When I wanted to leave my room on those days I had to wear a mask, gloves and a gown. I walked in the hallways of the transplant floor every day for exercise. I was out of bed every day all day except for the day when they re-infused my stem cells. My major problem post transplant and for several weeks following discharge to home was that I had terrible nausea that we couldn't seem to get under control.

All in all my transplant experience was fairly non-eventful. There really is no predicting how someone will respond to the drugs and the re-infusion of the stem cells. Many of us have had minimal to no problems and many of us have had side effects that kept them in the hospital for a few weeks. If you can, ask your father's doctor for as much detail as you can.

All the best to your father with his transplant,
Nancy in Phila

[redhawk1974]

Re: Cryosurgery for multiple myeloma?

by redhawk1974 on Tue May 03, 2016 10:20 pm

It has been months since I posted so thought I would give an update and ask opinions again.

He never received the stem cell transplant as his levels where never acceptable. The place on his head was a tumor in soft cell tissue. He just finished 3 weeks of spot radiation treatment to the area with little to no effect. So he has had several rounds of chemo, radiation, and different meds through this time. Stem cell transplant was a no go after all this again due to infection in the bone.

Now he is home and on Pomalyst (pomalidomide) and dexamethasone. He hasn't said much other than what was originally told of 3 to 5 years. But from everything we have read and his not responding, it will be more like 1 to 2 years with a median of 9 months. I don't really pay much attention to statistics as everyone responds differently but we do like to prepare for the worst and what to expect.

I think he may be keeping things to himself as to try and not worry everyone. So I guess if this is going to be the case what can we expect with his health decline, symptoms and such and what all activities can we do with him without exhausting him and letting him do as much with the grand kids as possible when he isn't feeling to tired.

I honestly fear depression will take him before anything else and that is what we want to avoid at all cost if we can.

Thanks everyone for advice and ideas.