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Thu Jan 29, 2015, 11:14 PM

So it appears I have relapsed.

My fever (mostly low grade) returned a few weeks ago. I'd had a nice, six week fever free run over the holidays. Just prior to that, my thyroid basically stopped functioning causing me to gain 40 lbs in about 30 days-,without changing my eating habits. But that was certainly odd and disturbing. Some of the weight is water- in fact, the last few days my body has filled with water like a ballon- very scary and painful. Something strange was definitely going on.
We moved up my scheduled Petscan from late Feb. to today to rule out relapse. And the preliminary report shows, sadly, that my lymph nodes appear to be popping up again. As they did just before my auto transplant in Aug.
I'm still in shock-may wind up being a two Xanax night. If this is what it appears to be, I have another long, torturous road ahead probably culminating with an allo (doner) transplant which as I understand it, is the only chance for a cure.
Letting it all sink in- it's a lot as you can imagine. Will start researching alternative treatment options as well and if anyone has any info on holistic/homeopathic therapies with a history of success for TCell Lymphomas (or any lymphomas actually), please send them.
Damn it all- was really hoping I couid close this chapter and move on to something new and fun. Fuck cancer.

Namaste

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Arrow 21 replies Author Time Post
Reply So it appears I have relapsed. (Original post)
KaryninMiami Jan 2015 OP
Hoyt Jan 2015 #1
YvonneCa Jan 2015 #2
Nay Jan 2015 #3
Solly Mack Jan 2015 #4
onethatcares Jan 2015 #5
slipslidingaway Feb 2015 #6
Tab Feb 2015 #7
cate94 Feb 2015 #8
KaryninMiami Feb 2015 #9
deurbano Feb 2015 #10
KaryninMiami Feb 2015 #11
NCarolinawoman Feb 2015 #12
Ruby the Liberal Feb 2015 #13
slipslidingaway Mar 2015 #14
FLyellowdog Mar 2015 #15
latebloomer Mar 2015 #16
slipslidingaway Mar 2015 #18
latebloomer Apr 2015 #19
slipslidingaway Apr 2015 #20
slipslidingaway Mar 2015 #17
wordpix Apr 2015 #21

Response to KaryninMiami (Original post)

Fri Jan 30, 2015, 12:19 AM

1. Will be thinking about you. Please keep us updated. Go ahead with the xanax.

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Response to KaryninMiami (Original post)

Fri Jan 30, 2015, 01:15 PM

2. ...

... So sorry to hear this.

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Response to KaryninMiami (Original post)

Fri Jan 30, 2015, 05:46 PM

3. Have you read my Web MD post in the Cancer threads? It had to do with beefing up

a patient's own T cells and reinjecting them into the patient -- it is in trials now, so maybe you could get into a trial? There is also a second procedure with T cells that you should read about. Both are in that article. It's very recent.

Good luck to you.

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Response to KaryninMiami (Original post)

Sat Jan 31, 2015, 02:37 AM

4. You're in my thoughts. I hope you can feel my hug because I'm sending you one.

I agree...fuck cancer.

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Response to KaryninMiami (Original post)

Sat Jan 31, 2015, 10:11 PM

5. Karynin,

my heart goes out to you.

I agree, fuck cancer.

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Response to KaryninMiami (Original post)

Sun Feb 1, 2015, 01:00 AM

6. Thinking of you and wishing for another explanation ...

and that the results are better than your current vision. From my reading quite a few auto transplants are followed by allo transplant with success, not particularly comforting words, but try and hang in there.



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Response to KaryninMiami (Original post)

Wed Feb 4, 2015, 11:47 AM

7. Wow, what a roller coaster

Sucks when it does that. I got to where the cure was worse (it seemed) than the disease. It's a long process. My thoughts are with you.

- Tab

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Response to KaryninMiami (Original post)

Wed Feb 4, 2015, 05:44 PM

8. Thinking of you

and hoping things are better than they seem.



and yes, fuck cancer.

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Response to KaryninMiami (Original post)

Thu Feb 5, 2015, 04:12 PM

9. Thanks to you all

It's been a tough and terrible week. I'm now on my 3rd and last chemo treatment for this week. Am swollen beyond recognition now (retaining massive amounts of fluids but no one knows why). You wouldn't recognize me from photos taken over the holidays. Also very very tired. Working hard on staying positive and keeping my hopes up- not away needless to say.

Hugs back to you all and thanks again!

Will keep you posted.

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Response to KaryninMiami (Reply #9)

Mon Feb 9, 2015, 06:26 PM

10. I'm really sorry to hear all you've been going through.

I hope there's an answer to the fluid retention ASAP, since that sounds so challenging, even without the rest of the situation... and I just hope you catch a a very BIG break all the way around. Sending hugs and BEST wishes...

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Response to deurbano (Reply #10)

Mon Feb 9, 2015, 10:22 PM

11. Thanks so much

Yes this is indeed a bizarre chapter. And presently, extremely uncomfortable. Walking like a healthy person would help a lot- it's deflating but very slowly.

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Response to KaryninMiami (Original post)

Sat Feb 14, 2015, 12:36 PM

12. I am really sorry you have to go through all this.

My heart goes out to you and everybody here.

I do not have cancer, but my myriad of so many painful autoimmune diseases draws me over to this site and allows me to empathize and relate. It's like you're getting hit from every direction.

You are very much in my thoughts and prayers.

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Response to KaryninMiami (Original post)

Sun Feb 22, 2015, 11:33 AM

13. Was thinking of you today

How are you feeling?

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Response to KaryninMiami (Original post)

Sun Mar 1, 2015, 01:04 AM

14. Please let us know how you are doing ...

other than it purely sucks! I heard some medical person in the halls last month discussing auto transplants and that they work 50% of the time and have read of other autos and then allo transplants, it does happen with success, but the word relapse does suck.

Hoping you can move forward to an allo and a cure! Keep your eye on the prize and do not let this cloud your path to the future!








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Response to KaryninMiami (Original post)

Sun Mar 1, 2015, 01:10 AM

15. I'm so sorry about your relapse.

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Response to KaryninMiami (Original post)

Sun Mar 1, 2015, 05:56 PM

16. I had an allo transplant for leukemia

It was 7 years ago, and the donor was a stranger. A good friend had an auto transplant for lymphoma and it did not take, so he had an allo transplant from his brother. He is doing very well 9 years later. From what I've heard the auto transplants don't seem to work as well, which makes me wonder why they do them.

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Response to latebloomer (Reply #16)

Tue Mar 24, 2015, 01:12 AM

18. Big congratulations to both you and your friend ...

as that it quite a milestone!



I recently heard a medical person at Sloan Kettering speaking in the hallway to another staff member (sounded as if he was training another person) who said the auto transplants work about 50% of the time. Just listening to others (at Sloan and the ACS Hope Lodge) it does not seem unusual to have one or two autos followed by an allo. But I guess if it works for half the population it is not a bad start.



One day they will have a better handle as to when and why it works on some people and not on others, seems they are still writing the book.

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Response to slipslidingaway (Reply #18)

Tue Apr 21, 2015, 04:16 PM

19. Thank you, slipslidingaway

That's interesting about the 50% statistic for auto- that makes it sound similar to allo.

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Response to latebloomer (Reply #19)

Tue Apr 21, 2015, 10:59 PM

20. Not sure about the stats just something I heard ...

about auto transplants. So many people I hear about have two autos and then have an allo or maybe eve two, then again we have been in environments where people are there because they have relapsed, we never get to speak to those people where transplants have worked the first time. Never heard of third allo transplants, the doc says they are very rare and with younger people.

Many of the people we have lived with recently are now having haplo-cord transplants, something we did not experience five years ago. All interesting, but wish we never had a reason to know!

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Response to KaryninMiami (Original post)

Tue Mar 24, 2015, 12:53 AM

17. Please check in and let us know how you are doing ...

sounds like a real rough patch, wishing things have improved!



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Response to KaryninMiami (Original post)

Wed Apr 22, 2015, 10:31 PM

21. Karyn are you there? Sending my best + alternative med advice

go 100% organic and do this woman's diet: kriscarr.com. She has lots of tumors, she's done a lot of research on food as medicine, and she's still alive and living a healthy life 13 yrs. after diagnosis with no conventional treatments.

I am Stage 4 that was operable, did chemo and I've been on a 100% organic diet since the operation in Jan. 2014. So far no recurrence. I don't have lymphoma but important point is the food/agric. industry is killing us with chemicals and denatured foods. So my advice is to get off that cycle and go organic. As for the more conventional approaches to dealing, I can't help. I wanted to refuse surgery (but didn't) as well as chemo (I did that one, too). I don't know what I'll do if I have a recurrence, but probably what I did before--research the hell out of the treatments and alternatives, get second or third opinions and talk to people who've been there.

The conventional route is death by a thousand cuts. You're weakened a bit here, a little there. If you're lucky, it works. Maybe you buy a bit of time. I think at some point I would go the alternative route but you never know until you have to cross that bridge and say yes or no to treatments.

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