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Last year I shared that I had treatment-resistent refractory stage 2 Hodgkin's lymphoma and had been admitted to the Mayo Clinic in Phoenix for an autologous bone marrow transplant. The forum showed an outpouring of support....despite the bickering and sniping (which I actually enjoy sometimes), you guys are pretty great examples of the two-wheeled brotherhood. If any you new guys wanna read that freakin depressing story, check it out here: http://www.vulcanforums.com/forums/showthread.php?p=403570

Well, since I went home last may I haven't shared much. Hate to be a downer, you know? Everybody got problems, don't need to hear about mine too. I kinda accidentally jacked the recall thread the other day, so I'd like to elaborate on what I said there, and catch up those of you who might be interested.

thing is, the high-dose chemo didn't eliminate my cancer last April. I wouldn't even call it relapse, because that's being way too generous. With an autologous transplant, we rely on the powerful chemo alone to do the job, but my cancer is resilient. It adapts. So I came in with cancer, and I went home with cancer. Everything else related to the transplant went beautifully, I'm happy to say. A couple minor complications that were easily handled, released from the hospital 4 days ahead of schedule, home by 44 days after transplant. Waaaaay ahead of the 4 months they say you should plan for. Unfortunately, I knew what I was going home with, and my oncologist at the Mayo and I had already discussed the next step: allogeneic (using a donor) bone marrow transplant. And I refused.

I went home and started an almost brand-new biologic treatment (the first and only for Hodgkin's) that seemed to work very well at first. I got to make 5 or 6 really great motorcycle trips with my wife. Put almost 9000 miles on the XR. My treatment showed promise and there were studies showing it could be used for long-term care as well. It fried the nerves in my hands and feet so they're numb and tingly, but still mostly useful, but no other issues from it.

Sadly, in January, my PET/CT scan showed that wasn't going to be a viable option. I wasn't stabilized. I had gone from stage 2 to stage 4 with metastasis to the liver and lung. When the treatment quit working, it quit hard. Well, that was the clincher. I would have to proceed, even tho I absolutely did not want to. I wouldn't have, had my condition not worsened.

I started a new chemo regimen that really didn't do much but dry out my skin and thin my hair some, but it nuked the cancer hard. I was able to catch some miles on the XR this spring too. Got restaged in early April, and we looked good to go.

We found 2 donors in the international registry (siblings weren't an option even tho I have 5 of them...only share both parents with 1 and she's got autoimmune issues and other factors that disqualify her). Went ahead and boogied back down to Phoenix for a week of testing...despite everything, I was still healthy enough for transplant. I managed to sneak in renting a XC from Scottsdale Indian-Victory for a nice 400-mile day ride, but that will be my last time on 2 wheels for some time.

So here I am again, trapped in a hospital room, just wanting to get better, get home, and ride. But this time I'll be in this room for closer to a month, and definitely have to stay in Phoenix till August...no going home before 100 days post transplant. Not only is there going to be high dose chemo, but we count on the donor's stem cells to recognize the cancer as foreign and attack it. That comes with its own risks, just as dangerous as the cancer. The donor cells might recognize my body as foreign and attack this. Serious business, this.

Once again, you guys will have to be my lifeline to motorcycling. My bike's 800 miles away, and it might be a long while before I'm healthy and strong enough to be riding it. Share pics, share stories, have good rides. Any of you visit Idaho, I definitely want a write-up and pictures.
 

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Wow. That's a rough go. Sorry to hear of your troubles, and wish you all the best. Hopefully all goes well. Try to keep up the positive attitude! It seems to help the recovery process. Keep your eye on the prize-many more two wheeled miles:)
 

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Pray with me friends.
Lord God in Heaven hear our prayer. You are Holy and Mighty. Please shower Your Love and Mercy over our brother and grant him healing! Let Your Peace and Comfort fill his soul with the Hope of Your Lovingkindness. Please let this treatment be successful. Guide those who are caring for him and wrap his loved ones in Your soothing embrace. May You be glorified in this trial. May You Will be done.
Amen!


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Ditto Kawpoke. Saying a prayer for you too-cancer can be beaten - my son in the next room is living proof! Two years ago he had what they called one of the worst leukaemias you can get, after full body irradiation, chemo and a bone marrow transplant he is still around. Testament to a lot of prayers to our God.


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Hang in there. Remember that none of us is going to make it out of here alive, so the important thing is to make the most of each day we have.
 

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Pray with me friends.
Lord God in Heaven hear our prayer. You are Holy and Mighty. Please shower Your Love and Mercy over our brother and grant him healing! Let Your Peace and Comfort fill his soul with the Hope of Your Lovingkindness. Please let this treatment be successful. Guide those who are caring for him and wrap his loved ones in Your soothing embrace. May You be glorified in this trial. May You Will be done.
Amen!


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Amen.
Christ be with you and your family.
 

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Best wishes to you Luciferiad. Keep your eye and your mind on your goals and you’ll do fine, one step at a time. In the mean time you can start an oil, Seafoam, or darkside thread; that should provide ample entertainment (and probably a few smiles). Best of luck!
 

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Hope this helps..........there is a book by a man who has had alot of success with treating your health problem............

Ty M. Bolinger Cancer:Step outside the box
www.cancerstepoutsidethebox.com

Also: www.mercola.com

You can Youtube...........Dr. Sherry Rodgers , Dr. Joel Wallach, Dr. Mercola.

Dr. Wallach's "Beyond Tangy Tangerine" Vitamin and Mineral Drink will help your strenght...........

Get well soon.........
 

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God's speed on a full recovery Luciferiad! Thanks for leading us in prayer Kaw-poke. Amen.
I'll make it a point to get pictures posted this year.
 

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Keep pushing and you'll reach your goal. The only way to eat an elephant is one bite at a time.

Wishing you the best!


Scott
 

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Hey Luciferiad, your've had a hard road brother, keep up the good fight, our thoughts and prayers be with you from a biker brother in NZ, the land down under.

As we say down our way "kia kaha ehoa" means "stay strong friend"

Regards, Ando.




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Discussion Starter #14
Update!

Fairly good news to report. I survived conditioning chemo with very little issue. No complications while in the hospital. Blood counts started coming back up very quickly, and I was discharged on Wednesday! Once again, this was quite early (about a week and a half earlier than the norm) and my doctors were quite surprised. They'll learn; I endure.

Now is the long haul. I have to stay in Phoenix for a couple more months so my doctors can monitor me for graft vs. host disease (no signs of this yet) and other potential complications. Outside of that, I'm doing well, trying to stay active, and being bored. But the hotel room is far better than a hospital room, and I'm not tethered to an IV pole anymore.

Thanks everyone for your support. Just wanted to keep you all in the loop.
 

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Our prayers are working! Let's keep them up until a full recovery is reported!
 

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That’s great news Luciferiad! Exercise and staying active is important; that will kick-start your immune system. Keep up the good work.
 

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GVH I remember that for my son-very important to keep on top of that but you certainly are aware of that already. Great news that early signs show you doing well-will keep you in our prayers too


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Great to hear Luciferiad, take care eh, we'll keep our prayers and thoughts with you. A wee piccy from our ride last weekend for ya. Cheers Ando

ImageUploadedByMO Free1401825988.502805.jpg


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Wishing you continued success..
I just got "cleared" after 18 months of fighting stage 3 non Hodgkin's lymphoma in my sacral area. Like you, radiation and first type of chemo did NOTHING......... 2nd chemo cocktail knocked it down pretty good but need the high dose stuff and stem cell therapy to finally get it to where a PET scan couldn't detect any activity.. Not a "great ride" as you very well know....
I am from NY and am hoping to ride this year to Wyoming, then cutting the corner of Idaho!! :) on my way to Las Vegas, then home via the south route.
Like I said. Wishing you the best..
 
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