Cancer Support

KaryninMiami

(3,073 posts)

14. Quick update from Lymphoma -Limboland

Wed Feb 12, 2014, 10:39 PM

Feb 2014

The night before I was to start the chemo, my oncologist called to say that while he was still confident in his assessment, one of the stains came back inconclusive after a few tests. They therefore sent it all up to the chief of research in lymphoma pathology at the Ntl Cancer Institute in Rockville, MD. So it could be a few days or a few weeks till we have word. Because they are not 100% positive that this is lymphoma (97%) and there is a remote chance that this is a bizarre infection, he did not want to start the chemo regime yet. So I wait in lymphoma limbo land.

They plugged me into an IV via my port and doused me with prednisone and anti nausea stuff and tons of fluids (haven't been able to keep food or liquids down very well this week) so I'm feeling a bit better now which is great. And with the nausea mostly down I can stay on top of the Tylenol so my fever is down which is also helpful. the stress of waiting this out- not so good but it's out of my hands...

Thanks again for all of your support and suggestions. Will update once I know what's what.

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Diagnosis-rare form of non Hodgkin's lymphoma [View all] KaryninMiami Feb 2014 OP

Hang in there. Locate a support group and attend a couple of meetings. I didn't sinkingfeeling Feb 2014 #1

Do you have a nurse navigator? Ruby the Liberal Feb 2014 #2

Thank you KaryninMiami Feb 2014 #5

I also had a person called a patient advocate/coordinator who mapped out Nay Feb 2014 #7

Mine was through the cancer center at the hospital Ruby the Liberal Feb 2014 #8

Hi Karynin, pangaia Feb 2014 #3

Thanks for your advice! KaryninMiami Feb 2014 #4

You are very welcome. pangaia Feb 2014 #6

I have to second pangaia Ruby the Liberal Feb 2014 #9

I will only echo that the LLS group has been a wonderful source of support ... slipslidingaway Feb 2014 #11

Thanks so much-greatly appreciate your support! KaryninMiami Feb 2014 #13

We all need to support one another ... slipslidingaway Feb 2014 #15

I don't have any tips, just suport. 2theleft Feb 2014 #10

Thanks so very much for your lovely words and support KaryninMiami Feb 2014 #12

Quick update from Lymphoma -Limboland KaryninMiami Feb 2014 #14

Better to make sure of the diagnosis ... slipslidingaway Feb 2014 #16

A vanishing fluke ! KaryninMiami Feb 2014 #19

Reading your update, you have some tough times ahead ... slipslidingaway Feb 2014 #24

I'll take this as a good sign Ruby the Liberal Feb 2014 #17

I sure hope so KaryninMiami Feb 2014 #18

Verdict is in- original diagnosis was correct. Chemo Starts Monday. KaryninMiami Feb 2014 #20

Hi there karynin.. pangaia Feb 2014 #21

Thanks for making me smile KaryninMiami Feb 2014 #22

Well I just realized I should call you Karyn.. DUH!!!! pangaia Feb 2014 #23

First round of chemo done KaryninMiami Feb 2014 #25

Great to hear the first session went well. pangaia Feb 2014 #26

New adventure every day KaryninMiami Feb 2014 #27

Have you considered a hair "halo" that can be worn under hats? deurbano Mar 2014 #28

Thanks very much- will look into it. KaryninMiami Mar 2014 #30

Hi Karyn, pangaia Mar 2014 #29

Symptoms subsided thank goodness KaryninMiami Mar 2014 #31

Hi Karyn, pangaia Mar 2014 #32

1 more to go in this round - however KaryninMiami Mar 2014 #33

Hair and blood cells pangaia Mar 2014 #34

Halfway thru chemo - yay! KaryninMiami Apr 2014 #35

Keeping you in thoughts! Ruby the Liberal Apr 2014 #36

Keeping you in my thoughts and prayers maddezmom Apr 2014 #37

Just checking in... 2theleft May 2014 #38