[Mike F]

New member

by Mike F on Sun May 20, 2012 3:15 pm

Hi all -

As you can see by my profile, I am a brand-spanking new member of this club-no-one-would-ever-want-to-join. Quick personal stuff - 53 years old, married, two daughters at 14 and 21.

Health stuff is as follows: About a year and a half ago, I had a routine oral surgery procedure that caused more bleeding than the oral surgeon thought appropriate. He advised me to get some clotting test run. When I did so, the clotting times were ok, but my calcium level was quite high. My then-doctor puzzled that over, ordered some more tests, and found that my vitamin D level was down to next-to-nothing. He put me on vitamin D and seemed happy with the results. Last November, I switched medical groups and asked my new doctor to check the clotting factors one more time. They were indeed a bit off, so he sent me to a hematologist for more work. She ran some more tests and was absolutely bored to tears with the clotting stuff but was very interested in the anemia and high calcium (barely above normal range) that showed up. After that, things happened very quickly. They ran blood proteins and had me in for a bone marrow biopsy the next day. I went from a diagnosis of anemia to one of monoclonal gammopathy to multiple myeloma in the course of a week or so. I''m at stage 2 now, and I'll start on lenalidomide and dex just as soon as the insurance authorizations come through and they work out where I need to pick it up. She's talking about an autologous stem cell procedure in 4 - 6 months after they (hopefully) knock the protein levels down. We're still waiting on the results of the cytogenetic tests.

I'm fine as far as symptoms go. No bone pain, no kidney problems, no fatigue. X-rays showed a lesion in my left humerus and some possible ones in my skull (although they aren't sure about those) but that's it as far as bone problems.

Needless to say, my head is spinning . I've always been very healthy (have never spent a night in a hospital) so the idea of any difficult disease, much less a potentially terminal cancer condition, is difficult to grasp. Researching this on the internet has educated me but has not helped stop that head-spinning yet. My doctor says I should think of this like diabetes; as a disease that is difficult but which can be managed for a number of years to come. Certainly, the prognosis for someone like me is far better than it was 10 years ago. I'm relatively young, in good shape, no other known health issues, etc., so I have a lot going for me compared to many others who have this thing. At the same time, I can't keep the thought away that for many, the time left after a diagnosis is measured in months and not years. Beyond the whole "here comes death" thing, I'm also worried about side effects from the meds, whether I'll be able to stay with my beloved job, how I'll tell family and friends about this, whether I'll still be able to have a glass of wine or a cocktail with my dinner (which are two things I'm quite passionate about for reasons that don't involve alcoholic buzz), and a host of other mind-preying worries. It's been a rough weekend, what with feeling like a trapdoor just opened under my soul.

I do know that time will help with this. It's a new reality for me and I have to think that when I'm still here in a week or a month, I'll be able to get past the panic and do what I need to do to stay as healthy, active, and alive as I can for as long as I have left (whether that's measured in days or decades). One thing that's already helped is reading some of the posts here. It was difficult for me to make myself register on the site, but it's too important a place to stay off of. Thanks so much to those of you who don't know it, but who are helping me adjust to this nasty new situation.

For now, I'll keep telling myself that the worst that can happen is that I get hit by a bus tomorrow, and that's no different from any other time in my life!

[Kevin J]

Re: New member

by Kevin J on Sun May 20, 2012 4:30 pm

There are several regular contributors to the forums that have similar experiences to you, including myself. You're right, you will adjust with time, but it is going to be difficult for a while. I found the first couple months the worst. After that, it was a gradual acceptance and I went from thinking about it 80-90% of the time, to where I only occasionally dwell on it now. Life is actually close to normal in many respects, though I still find myself feeling somewhat stunned by the fact I have cancer. Hope you are able to find good options for treatment. Feel free to reach out for advice, support, etc. any time you need.

[terryl1]

Re: New member

by terryl1 on Sun May 20, 2012 10:22 pm

Hi Mike F., You are definitely not alone and we all know exactly how you feel. I was diagnosed last August at age 49 because my family doctor noticed my white blood count was a little low. I had blood work done only because I was on Lipitor for mild high cholesterol and my doctor had to check my liver function periodically. A referral to a hematologist led to my shocking diagnosis several hours before a two week trip to Europe. I have a wife and two young sons and am at the height of my career, so the diagnosis basically crushed me. However, I educated myself, contacted multiple myeloma support groups and saw several multiple myeloma specialists. I learned that one cannot live in a perpetual state of panic and that with myeloma, unless you are in the midst of kidney failure, etc., you tend to have time to see several multiple myeloma doctors and to determine the best course of action for yourself. You seem to have found an multiple myeloma specialist. It wouldn't hurt to seek a second opinion just for your peace of mind. I found two multiple myeloma experts I trusted, however, they have different philosophies regarding SCT's. One is pro-SCT and the other pretty much against in the era of novel drugs. Who is right? Who know? In myeloma, as I said , there are multiple myeloma specialists who are pro-SCT and others who do not like the approach and some who are in the middle. For a patient, it can be confusing in that you have to make the ultimate decision as to what your treatment is going to be. You can also check out the International Myeloma Foundation's site which has a great hotline manned by experienced personnel. The MMRF also is a good site as well as the myeloma ACOR listserv.

When I was first diagnosed, I couldn't focus on anything other than this damned condition. In hindsight, I know now that I neglected my wife and and two sons as I obsessed and brooded, etc. Now, in the midst of treatment, it is always present but I try to focus on being a good husband and father first and I pretty much am able to work as I did before diagnosis. If you follow this site and others, it is clear that the treatments are getting better and better and there is always the hope of a functional cure fairly soon---maybe it will be a vaccine or immunotherapy. ....who knows...but there is a lot to be positive about looking forward. Hang in there. We are all here for you! Terry from NJ.

[Mike F]

Re: New member

by Mike F on Mon May 21, 2012 12:43 am

Thanks guys - I really appreciate those replies.

Kevin - it's good to hear that you were able to get out of this hole of obsessing about the disease in the course of a month or two. I will keep that in mind as I go forward - it will certainly help.

Terry - I think I've happened on to a pretty good hematologist. She and her attending physician seemed to know what they were looking at the minute I walked in the door. You're right about the confusion involved in looking at the different therapies available - the different drugs and their combinations, It's going to be quite an experience trying to sort out what's right for me. Thanks for the info on the MMRF, too - I wasn't aware of that organization.

I also greatly appreciate the offers of more support - it's a comfort. I hope I can add some of my own support to others here in the future.

Thanks again!