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Stem cell transplant,Portland,OSHU

catlinwade
Posts: 8
Joined: May 2011

Howdy: New here. Wanted to know if anybody here has had a stem cell transplant at OSHU in Portland, Oregon. Or maybe knew of or know

of anyone who had it. I live in Eugene, diagnosed with intermediate NHL,unclassified. No one can figure out what it is. Frustration to say the least.
Starting Tx #4 soon of R-Epoch at Willamette Valley Cancer Center. Life did a 180. Anyway, any help that can be provided will be much appreciated
Thank you

Richard

dixiegirl's picture
dixiegirl
Posts: 1043
Joined: Apr 2006

Welcome Richard,

I haven't been to your part of the world, but I am getting ready for a Stem Cell Transplant here in Kansas City.

I'm sorry they cannot figure out what it is, I am sure that has to be frustrating to say the very least. I know with my original biopsy they had to send it out to Mayo clinic for a 2nd opinion because it was basically 2 rare kinds that overlapped each other. One of the types is only diagnosed less than 1% of all NHL's.

It took two weeks to get the diagnosis in and by then I was a total and complete basket case. How long have you been doing chemo?

Take care
Beth

catlinwade
Posts: 8
Joined: May 2011

Hi Beth:

I am starting treatment 4. Two places have diagnosed the same thing: unclassified. May try for one more read if I can pull it off, not sure insurance will go for a third opinion (and ins is the deal breaker).It is, indeed, frustrating. But just keep moving forward and trying to stay in the positive.

What sort of Prep do you have to do for your Stem Cell transplant and when is it? Hope and pray all goes well.

Take Care
Richard

dixiegirl's picture
dixiegirl
Posts: 1043
Joined: Apr 2006

I'm sorry I didn't answer your questions, I did not see the post. I went for 2 days of testing. They've tested my heart, lung function, teeth/jaw, x rays, bone marrow biopsy and blood tests (they took 13 tubes of blood I kid you NOT). I've had a very drippy nose and they even tested that, never had that done before, but they have to know about ANY kind of problems.

It's been 2 exhausting days. I am still trying to recover.

Take care,
Beth

Michele23
Posts: 167
Joined: Mar 2011

Hi Richard,Very sorry that I cannot be of any help but there are many good people here and I'm sure someone can assist you farther in you search.You say your having a stem cell transplant without a true Dx?Aren't there any major cancer centers near you that can give you these answers before you go for a transplant?That's tough.Hope you can find some help here.Good luck in your quest.Take care,Michele Dx95 FNHL3

catlinwade
Posts: 8
Joined: May 2011

Hi Michele:

The largest cancer center for us is the Knight Cancer Center in Portland,Or. Not having stem cell trans for sure but it may or may not be in the future. I start treatment 4 tomorrow. The second opinion was the same as the first: unclassified. So have been treating with R-EPOCH. It's just one foot in front of the other at this point but just wanted to see in anybody has had experiences at Knight Cancer Center.

Thanks and you take care

Richard

aimeedonn
Posts: 5
Joined: May 2011

OHSU is amazing, and they have a great transplant team. I personallly have not had one, but have had friends go to OHSU for transplants. I have also met with Dr. Maziarz to discuss transplant if that's where I have to go. He is amazing, truly the best of the best. If I were you I would try to get into OHSU, their whole team rocks. I am also on the R EPOCH treatment. Even if you can't get up to OHSU, ask your oncologist to call them, mine did and conferred my whole treatment plan with them as I didn't have time to go up for a second opinion in the beginning.

catlinwade
Posts: 8
Joined: May 2011

Wow...thanks. That is a big boost of confidence. My onc did send my pathology stuff up there and got a second opinion, which was the same as the first: unclassifiable. Not knowing for sure what it is sorta keeps me awake at night (and of course the steroids). But will keep after it. Actually went for one visit there met with Dr. Chen, so I am somewhat tied into the system there should a transplant be necessary. It was really good to hear your report and reactions of your friends to OSHU. Where are you in your R-EPOCH treatment. I start the 4th treatment session tomorrow. Do you have a pump or do you have to go to the hospital. I have a pump and although it is a bit of a pain it is way way better then 5 days in hospital (which my first session was). How are you tolerating your treatments. 2nd week is the worst for me..steroid withdrawal and the side effects of a Neulasta shot put me down for close to a week then week three is not bad, just really tired and low energy.

You take care

Richard

aimeedonn
Posts: 5
Joined: May 2011

I hear Dr.Chen is amazing also, my oncologist thinks highly of him. I am so sorry that they are unable to nail down a specific diagnosis. I know that has to be hard. Keep you chin up. I am currently between rounds 6 and 7. I go in for #7 on the 25th, and that should be my last round. I was only going to do 6 rounds, but after my 4th round and PET, they increased the dosage 20% and added another round. I don't have a pump, I actually didn't know you could do R EPOCH with a pump until I was looking around on the boards. So I do the 5 day hospital stay (which is not fun). 2nd week is also the worst for me, the steroid drop-off is b-r-u-t-a-l. The nuelasta shot doesn't affect me too much. This round I am battling mouth sores, which haven't been a problem until now. Third week is golden, I am still tired, but I feel normal. I am going to see if my oncologist will maybe ween me off the steroids this last round so "the drop" isn't so severe. Do you know how many round they are planning? 6 or 8?

Hang in there,

Aimee

catlinwade
Posts: 8
Joined: May 2011

Hi Aimee:
As of now it looks like 6. Doc seems to think that after 6 it gets harder on one's heart. Although I was in great shape, walking 5-6 miles 5 times a week, I think because of my age (66) he is going to keep it at 6. But anything is possible. Apparently having the epoch part of the regimen given thru a pump is quite unusual and I think (don't really know but I may be a bit of a test case) all the nurses at the infusion center found it quite unique and called me Mr. Unique for a bit. But it is way way better then the horsepistol and no problems so far. Docs name here in Eugene is Peter Kovach. It sure cuts down on cost, I guess.

Sorry about the mouth sores...do you know about using of rinse mixture of salt and baking soda...I've had a few mouth sores and the rinse pretty much took care of that. Taper of the steroids is a great idea...should take care of the dreaded steroid drop off.

well you take care

Richard

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