[MichelP]

Can I join the club?

by MichelP on Wed May 25, 2011 1:56 pm

Hello everyone,

Well, here’s my little sob story. I write this as much to vent off as to introduce myself. I’m pretty sure that most of you have gone through much worse than this, so at the risk of sounding like a whiny little boy… here goes anyway.

I’m a 56 years old male from Montreal (warning: French is my primary language so you’re likely to see some grammatical errors) Six years ago after a routine complete physical, I was diagnosed with smoldering myeloma. At the time I had a bone marrow biopsy (20%), a complete skeletal survey that showed no lesions and a pet scan that apparently did not reveal any lesions. My Iga monoclonal peak was at about 10g/L (I’m a Canadian and I think the doctors here are using a different system for measurements). At the time the oncologist I saw said that I did not need any treatment. I would go for follow-up visits every 3 months where they would draw blood, I would see the oncologist who would check the results, ask me a couple of questions and off my merry ways I went. Like I said this went on for six years and myeloma sort of became a vague afterthought that I became convinced would not affect me in any way, until about a month ago.

I was out playing my first golf round of the season when I felt a very sharp pain in my rib cage while swinging my driver. The round was almost over and being the macho guy I am I kept playing through the pain (badly) and finished the round. The week after that I gobbled up Ibuprofen tablets the whole week like they were going out of style to fight the pain, by the time the next weekend came the pain had subsided a bit so I went back to playing golf again. Bad idea! I played two holes and stopped because the pain was so bad. The next day I went to a clinic where they radioed my upper torso and found a pathologic fracture on a rib along with bone lesions in several areas, I knew enough about myeloma to realize that was not necessarily good news. It just so happen that I was scheduled to see my oncologist a few days after, so I asked that a copy of the radiologist report was sent to him. Turns out my IgA peak more had than doubled since my last visit. My oncologist performed a bone marrow aspiration and biopsy (boy do I hate those) and I underwent a complete skeletal survey and was asked for a 24 hours urine. A few days later, saw the oncologist again who said that he was positive that I would need to begin treatments.

As I write this I’m supposed to see my oncologist again tomorrow to get the results of the skeletal survey. Also he was waiting for the result of a genetic test to see if I had T4:14 translocation, before determining the treatment protocol. If I do have the darn thing (which sounds pretty much like a death sentence from what I read) he wants me to participate in a phase 2 clinical trial that includes (I may be wrong, I’m still a newbie remember) Velcade –Doxin –Melphalan and some other related happy pills who’s name I cannot remember now. I’m a little apprehensive of the side effects of the treatment, they also mentioned autologous stem cell transplant in the future, which doesn’t sound like a picnic. I’m not sure if I’ll be able to continue working. So many questions I do not know the answer to yet.

The toughest part for me right now is mostly psychological. My wife and I are pretty much in shock at the moment. It’s hard to concentrate on anything else. It seems that every idle moment Myeloma is all I think about. I’m trying to put on a brave face because of my wife but the truth of the matter is I’m scared. The whole thing seems so unreal to me (guess this is what they call denial). My main thought is “I cannot have cancer, I don’t feel sick!!!” because for now, other than mild fatigue and some rib pain, I’m not in any real discomfort. I can still work and maintain my normal daily routine.

So here’s where I’m at now, at the moment I’m reading as much as I can about Myeloma and trying to learn the jargon. I’ve read a lot about your experiences here and no doubts I will be asking questions in the near future.

Thanks for reading this.

Michel,

[nadia33]

Re: Can I join the club?

by nadia33 on Fri May 27, 2011 12:18 am

Hi
My sister was diagnosed a few weeks back and the whole reality is being settled still. So I understand what u r going through and we r only a few weeks ahead. But it does get better. There r a lot of treatment options. There will be UPS and down but this is not a death sentence so please don't feel that way. The good thing is that it is manageable and once u do that u can go back in doing mostly ur regular daily activity. Of course there will b bumps on the way but from what I hear, it gets better. Take it a day at a time.
Nadia

[MichelP]

Re: Can I join the club?

by MichelP on Fri May 27, 2011 1:35 pm

Hello Nadia,

Thanks for the reply. When I wrote the above I was feeling a lot of anguish and felt the need to vent some of it. I’m feeling a bit better now, I saw my oncologist yesterday and he told me I was negative for the T4:14 translocation, which improves my prognosis quite a bit, so that was a relief. I’m supposed to start treatments next week. Like you said it’s one day at a time now. Besides, I really cannot complain, I’ve read stories here about people who are a lot worse of than I am. I really do hope things will be OK for you’re sister as well.

Thanks again,

[Matt]

Re: Can I join the club?

by Matt on Fri May 27, 2011 2:30 pm

Michel,

Things will get better. You have not yet received the genetic report from the pathologist, so you don't know if you have the translocation.

Because you have not received any previous treatment, there is a strong likelihood that you will respond well to chemo.

No, a stem cell transplant is no walk in the park. But within two months of mine I had my hair back and was able to pursue my hobbies. (No golf, however. Because of the compression fractures I don't think I will ever be able to swing a club properly again. But I do ride a motorcycle.)

At this point, I am the happiest I have been in years. It took Multiple Myeloma for me to finally rid myself of the b.s. in my life that was robbing me of my joy. Today I make no apologies for pursuing my own happiness.

You may not find the strength to fight the disease today, but you will very soon.

[MichelP]

Re: Can I join the club?

by MichelP on Fri May 27, 2011 4:10 pm

Hello Matt,

Thank you so much for taking the time to write. I really do appreciate it. I'm glad you are doing well also. That gives me some hope for the future.

Thanks again,

Michel