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General questions and discussion about multiple myeloma (i.e., symptoms, lab results, news, etc.) If unsure where to post, use this discussion area.

Re: Biking with multiple myeloma

by suzierose on Wed Apr 25, 2012 9:27 am

Hi Mark and Kevin:

Kevin writes:
" sCR does not necessarily equate to better PFS or OS with respect to CR, while IR or MR does."

Yes!! That's why I am anxious to get the rest of the results. Unfortunately, I do not go to clinic again until after harvesting which is why I don't have results yet.

Liked that cycle!! I need something with a wider padded seat. :) Why do you call it a 29er? Is that height or weight?


Mark writes:
"A patient with VGPR could have LESS of a tumor burden than someone with a CR with negative immunofixation."

Precisely! Clinical trials show this often. A patient with a PR can have a longer PFS than a patient with CR. It was these type of confounding outcomes that resulted in stratifying multiple myeloma into risk groups based on cytogenetics as well as doing further tests as you mentioned like MR and IR. If I recall correctly it was the French group that looked at the former and the Arkansas group that looked at the latter to understand better the spectrum of outcomes which PR, VGPR, CR did not explain when it came to PFS.

And from Mark's second link:
"Achieving an IR translates into superior PFS and TTP compared with conventional CR or stringent CR. "

I also know for certain that they have done multiparametric flow cytometry (MFC) (high volume of BM aspirate) which will give me the immunophenotypic response (IR) and I suspect they are doing PCR as well for MR. YAY!

Now, I just gotta pray for great IR results....either way I will just soldier on.

suzierose
Name: suzierose
When were you/they diagnosed?: 2 sept 2011

Re: Biking with multiple myeloma

by Kevin J on Wed Apr 25, 2012 1:04 pm

I just got out of my appointment with the doctor and am waiting to get the poison pumped in. I asked about IR and MR, and UofM does perform tests for residual molecular disease (MRD) after CR is reached. My results were negative, indicating there is no evidence of the disease at the molecular level, so hopefully this will equate to even longer response.

My nurse practitioner also indicated the International Myeloma Working Group (IMWG) is currently reviewing their guidelines and thinks they are planning to add a test for MRD as recommended standard protocol.

suzierose,
29er refers to tire size. Mountain bikes have typically had 26" tires, but more recently 29" tires have been introduced. Proponents claim advantages to the larger tires, but like anything, you'll find people arguing either way. For me it was personal preference. I like the large size because it gives me a mountain bike with size similar to a road bike, and it rides a lot better than my old mountain bike ever did.

Kevin J
Name: Kevin J
Who do you know with myeloma?: myself
When were you/they diagnosed?: Jan 2011
Age at diagnosis: 52

Re: Biking with multiple myeloma

by Ron Harvot on Wed Apr 25, 2012 2:15 pm

Kevin,

I have been a road warrier and have not experienced trail riding on a mountain bike. It is funny that although there are pleanty of cross over riders that do both, the majority of the riders fall into one camp or the other. Most avid roadies don't ride mountain bikes much and vice versa. Sometimes the two groups are even snobbish about it.

Trail riding can be a bit more risky in terms of taking a tumble, however; you don't risk getting picked off by car.

Ron

Ron Harvot
Name: Ron Harvot
Who do you know with myeloma?: Myself
When were you/they diagnosed?: Feb 2009
Age at diagnosis: 56

Re: Biking with multiple myeloma

by Ron Harvot on Wed Apr 25, 2012 2:23 pm

I am riding in the 32nd annual German Fest Rally in Muenster, Texas this Saturday. Great ride in hilly terrain. Best thing is that each rider gets free admission to the festival and tickets for 2 free beers!! Plus they have great German food to go with those beers.

I will be doing the 100k (63 miles). This will be the 4th consecutive time I have ridden this Rally since my diagnosis.

Below it the website.

http://www.germanfest.net/home/index.php?option=com_content&view=article&id=51&Itemid=30

Ron

Ron Harvot
Name: Ron Harvot
Who do you know with myeloma?: Myself
When were you/they diagnosed?: Feb 2009
Age at diagnosis: 56

Re: Biking with multiple myeloma

by Kevin J on Thu Apr 26, 2012 11:03 am

Ron,
I'm one of the cross over riders. I originally started as a road biker, but eventually began mountain biking too. Several years back I started riding to work regularly and found I was getting too many flats with the road bike so went from ridng the road bike most of the time to riding the mountain bike more often. Also, with all the rail to trail paths popping up, and all the bike paths they've added in my area, I find the mountain bike more useful. Consequently, I didn't even ride the road bike last year and that's why I'm selling it. I've also experienced the snobbishness. Since I've switched to the mountain bike, probably 90% of the road bikers don't even acknowledge me anymore. Also find it interesting when I occasionally pass a road bike. Some find it so insulting that they get up in the stirrups and sprint to get way ahead of me, then keep pushing it to make sure I don't catch up - at least I can get some satisfaction in knowing I'm motivating them to work harder :D.

Kevin J
Name: Kevin J
Who do you know with myeloma?: myself
When were you/they diagnosed?: Jan 2011
Age at diagnosis: 52

Re: Biking with multiple myeloma

by lyndaclark on Thu Apr 26, 2012 11:08 am

I've been in complete remission for 6 years. This Saturday, I will be walking my second mini-marathon. I have a long rod inserted through my left thigh bone due to a broken femur as the result of a myeloma lesion. I try to "listen to my leg" as to when I'm doing too much (took a week or so off from walking recently). My doctor advised me not to run anymore because it could result in bursitis in my hip (and actually advised me not to overdo it walking so I take it slow and easy).

I recently got one of the "baby boomer" cruiser bikes that I hope to ride quite a bit. I couldn't ride my old bike due to fear of falling and hurting my leg. (I have quite a bit of muscular imbalance due to the surgeries on my left leg.) I thought using this lower profile bike would be a good alternative for me.

lyndaclark
Who do you know with myeloma?: Self
When were you/they diagnosed?: August 2005
Age at diagnosis: 49

Re: Biking with multiple myeloma

by Kevin J on Thu Apr 26, 2012 11:21 am

lindaclark,
Sounds like you're a great example of finding what works to get some exercise. Sure hope the bike works out for you and that you start recovering muscular balance in your legs. How long has it been since your surgeries? I also gave up running some years back (not due to multiple myeloma, but due to an ITB issue that would cause my knee to give out). I was training for a triathlon at the time and after it happened I went to see an orthopedic / sports medicine doctor. He said I would need to change my stride or just stick to biking and swimming. Since I don't think I ever enjoyed a run in my life, I went with biking and swimming.

Kevin J
Name: Kevin J
Who do you know with myeloma?: myself
When were you/they diagnosed?: Jan 2011
Age at diagnosis: 52

Re: Biking with multiple myeloma

by Eric Hofacket on Thu Apr 26, 2012 11:36 am

So if my SEP was normal, light chain ratios are dead center where they should be, and I had just the faintest trace of precipitation on immunofixation indicating some monoclonal protein, what kind of response would you call that? My doctors called this a near CR.

Eric Hofacket
Name: Eric H
When were you/they diagnosed?: 01 April 2011
Age at diagnosis: 44

Re: Biking with multiple myeloma

by Anonymous on Thu Apr 26, 2012 1:42 pm

Eric,

I would call that a CR and possibly a stringent CR. I have what is called Light Chain Myeloma and have never had a measurable M spike. On my immunofixation tests it shows a "faint" marker that cannot be seperated. My Oncologist uses the Light Chain Assay as a way to track me. I originally had a high IGG Kappa reading that since July of 2009 has been in the normal range and the LC ratio has also been normal. So he claims I am in remission and doing very well. Given the fact that it is almost 3 years in this remissive state is what is important. The fact that I still have a "faint" marker is not material IMO.

Ron

Anonymous

Re: Biking with multiple myeloma

by Kevin J on Thu Apr 26, 2012 9:26 pm

Eric,
I was in the same state as you are for several months (i.e., only thing abnormal, besides me in general, were trace M-Proteins detected with immunofixation) and my doctors also referred to it as nCR. It wasn't until this past Jan when the immunofixation came back negative too that they declared it a CR. The subsequent BMB came back neg, and that's when it became sCR.

Kevin J
Name: Kevin J
Who do you know with myeloma?: myself
When were you/they diagnosed?: Jan 2011
Age at diagnosis: 52

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