[concerneddaughter]

Same plasma cell percentage as at diagnosis - meaning?

by concerneddaughter on Wed Sep 09, 2015 11:44 am

Hi everyone,

My dad was diagnosed in April of 2014 with stage 3a multiple myeloma. He was 49 at the time of diagnosis. I believe the reason for his young diagnosis has to do with the line of work he was in. He worked in factories around dust, possibly asbestos, and other harmful chemicals.

Anyways, my question is this. Why would a recent bone marrow biopsy show he has the same amount of cancer (50% in his marrow) that he did when he was first diagnosed a year and a half ago? Are the treatments not working? Was his disease too progressed at the time of diagnosis for the treatments to even help? Is there any hope?

The doctors are pushing him to do a stem cell transplant using his own stem cells, but he can't until they can lower the cancer in his bone marrow. They will be attempting to do this by giving him three different chemotherapy drugs at once. I'm just scared that if that doesn't work, he can't do the transplant. The transplant is supposed to add some years to his life and without it his doctor said he would "get worse and die".

I've done some research online, which I know isn't always a good idea. I've read that for stage 3, he has 29 months to live. It's already almost been two years. I can't lose him so fast. I'm only 21. He's only 50.

So can someone answer my questions and give me hope? I greatly appreciate it. I'm praying for each and every one of you that is going through this horrible disease or having to watch a loved one go through it. Thank you.

[Mike F]

Re: Same plasma cell percentage as at diagnosis - meaning?

by Mike F on Wed Sep 09, 2015 3:59 pm

I'll start, but I'm sure others who are more knowledgeable will chime in.

First off, the staging with myeloma is not like that of some other cancers. The stage you're diag­nosed at (stage III, II, etc.) is less important than your response to therapy. So take the fact that your dad was at Stage III with a grain of salt. That has little to do with his prognosis. He may still have many years ahead of him.

You don't mention what the treatment is that your dad has had so far. It sounds like it's kept his disease from progressing, so that's usually considered a good thing. It does sound as though your dad hasn't responded as well as one would like, though, and that would be a good reason to try a different therapy. There are a number of them available now and it makes sense to try another drug or combination of drugs if the first one isn't doing all that well. Do you know what the three drugs are that your doctor wants to start your dad on?

The stem cell transplant your dad is looking at doing is the standard of care, but many doctors (if not most) want to knock the disease down with drug therapy before doing the transplant, so it sounds like your dad's doctors are following a more or less standard practice. He's pretty young, so if he's otherwise in good shape the transplant should not be too difficult for him.

As far as hope goes, you have LOTS of reasons to keep that going. A three drug combination can be very effective in taking the myeloma down to where a stem cell transplant can be used to provide years of cancer-free living. Myeloma is incurable but it's treatable and getting more treatable all the time. There's a lot that can still be done for your dad.

[torimooney]

Re: Same plasma cell percentage as at diagnosis - meaning?

by torimooney on Wed Sep 09, 2015 5:12 pm

I don't know the answer to your question. My suggestion is he see a multiple myeloma specialist if he is not already doing so. If he is, a 2nd opinion from another multiple myeloma specialist never hurts. Best wishes for your Dad.

[Multibilly]

Re: Same plasma cell percentage as at diagnosis - meaning?

by Multibilly on Wed Sep 09, 2015 5:39 pm

Hi Concerned,

I'm sure this must be a frightening time for you and your dad.

You've gotten some good comments so far.

Again, it's difficult to comment without knowing more about what drugs your dad has been taking, how he has responded to the drugs over the past year and what drugs are now being contemplated.

But here are a few thoughts in the meantime.

1. A lot of folks at Stage 3 and/or with a high bone plasma percentage respond quite positively by either changing the dose or adding a third drug to a regimen that might have stopped working.
    
2. Using three drugs (a triplet) is pretty commonplace when treating multiple myeloma, re­gardless if one is contemplating a transplant or not. It's not a "Hail Mary" kind of treatment that one uses as a last resort, but is instead one of the more common upfront regimens that is used today. One of the more typical triplets is Velcade + Revlimid + dexa­meth­a­sone, but there are many combinations of three drugs that are used today. Many factors and considerations go into which specific triplet might be best under the circumstances.
    
3. Were his blood markers suggesting that he was responding well for a period of time and then started to reverse before they did the bone marrow biopsy? Or, has he not been responding well to the drugs over the past year and half?
    
4. As Tori mentioned, it would make sense to get a second opinion from a top multiple myeloma specialist on the best course of treatment under these circumstances. If you let us know which city your dad is in, folks on this forum can make some recommendations on where to find these specialists.

Last edited by Multibilly on Wed Sep 09, 2015 5:56 pm, edited 1 time in total.

[concerneddaughter]

Re: Same plasma cell percentage as at diagnosis - meaning?

by concerneddaughter on Wed Sep 09, 2015 5:53 pm

Thanks for the replies. As far as what treatment he's been on, I want to say it's Velcade. All I know is he gets a shot in his stomach every couple weeks and has to take ten pills right before it? I'm not sure what three drugs they want to use on him before the transplant, but those three mentioned do sound familiar.

And as far as his blood markers, I'm not too sure. I just know his protein levels are rising again and that's why they wanna do the transplant. So I am assuming that the Velcade worked for awhile and kept his protein levels low, but now they are rising again.

He's just feeling real weak and down lately. He still works full time, but usually sleeps his whole weekends away. I'm just so worried ...I feel like he over works himself on top of having cancer.

[Mike F]

Re: Same plasma cell percentage as at diagnosis - meaning?

by Mike F on Wed Sep 09, 2015 6:12 pm

I can't blame him for wanting to keep working – that's what I did through all of my treatment right up to my stem cell transplant. If I could have worked from the hospital then, I'd have done it. For a lot of us, it's good to feel like we can keep up our normal activities such as going to work every day, if it's at all possible.

One question – have you gone along with your dad to see his oncologist? If you can, that might be a good thing to do. It would give you a chance to get a number of your questions answered directly from the doctor and I am guessing that this might offer some reassurance.

Don't even begin to give up hope yet, though. Your dad is going through a lot right now but that does not mean that all is lost or even close to it. I felt pretty awful when I got my diagnosis (I was 54 at the time) but things have gone very well and, at present, I wouldn't know I have any type of chronic disease whatsoever. Your dad may well find himself feeling similarly in another year or so.

[concerneddaughter]

Re: Same plasma cell percentage as at diagnosis - meaning?

by concerneddaughter on Wed Sep 09, 2015 6:22 pm

Thank you, Mike F. I've been with him to a couple of appointments and didn't get many answers besides what stage he was in, what his protein levels were at, and the side effects of doing the stem cell transplant. I wish I could go to every appointment, but I work and have a one year old to take care of as well, so it's kinda hard.

[JimNY]

Re: Same plasma cell percentage as at diagnosis - meaning?

by JimNY on Wed Sep 09, 2015 6:56 pm

Hi ConcernedDaughter,

You've gotten a lot of really helpful advice here, including the advice you've received from Mike F. However, I do want to quibble a bit with Mike's description of stem cell transplants as "standard of care."

I've read lots of journal article abstracts (and articles) related to multiple myeloma, and it is true that you often see the statement that stem cell transplants are the "standard of care" when it comes to the treatment of multiple myeloma. That having been said, when you look closely at who uses that terminology, it is very frequently doctors who are what are known as "transplanters" – that is, physicians whose practices focus heavily on stem cell transplantation.

Other myeloma specialists, particularly U.S. myeloma specialists, tend to be more hesitant about describing transplantation as "standard of care".

Indeed, the Mayo Clinic's consensus guidelines for the treatment of newly diagnosed myeloma patients do not recommend transplantation for all patients who are stem cell transplant eligible. (Yes, the guidelines do recommend transplantation for many eligible newly diagnosed patients, but not all.)

Hope this is helpful and doesn't add any confusion to your information gathering.

[Multibilly]

Re: Same plasma cell percentage as at diagnosis - meaning?

by Multibilly on Wed Sep 09, 2015 7:19 pm

Thanks for bringing this up, Jim, as I was a little reluctant to comment on too many items in my initial response.

As a follow up to Jim's comments, I think it was a bit irresponsible of your dad's doc to make com­ments that would lead you to make the statement, "the transplant is supposed to add some years to his life and without it his doctor said he would 'get worse and die'." No doctor knows whether a transplant will work for a given patient, let alone add several years to one's life.

One could just as easily make an argument for a drug-only approach to treatment, which would use different drugs and doses over time (and there are many on this forum who have taken that route). You can easily find discussions on this forum of whether to transplant or not.

This is just another good reason why it might make sense to have your dad seek out a second opinion.

[concerneddaughter]

Re: Same plasma cell percentage as at diagnosis - meaning?

by concerneddaughter on Thu Sep 10, 2015 6:11 pm

Thank you, guys, for the responses. My dad is currently in the hospital for four days while they give him the three chemotherapy drugs through a PICC line.

I agree that the doctor shouldn't give false hope like that. They seem to sugar coat everything and not talk about what happens if the transplant doesn't work. And to say that it will add several years is kind of crazy as well. I do agree that he should get a second opinion, though.