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Arobben

Jager's picture
Jager
Posts: 32
Joined: Jun 2009

How are you mate?

I hope you are doing fine, it´s just that I have not seen a post of you for several days and wish you are well mate and just hanging around with no time to post.

Best wishes to you

Mario

MichelleP's picture
MichelleP
Posts: 254
Joined: May 2009

Robbin....I'm worried too....where are you my friend? I hope all is okay?

ARobben's picture
ARobben
Posts: 46
Joined: Apr 2009

Sorry to have everyone worried. I have had a fever for the last week and a half or so and have not had the energy to do much else but try and fight the fever. It's pretty low grade, usually somewhere just under or just over 100, but it has knocked me out. I had a full work-up done, and doctor's aren't exactly sure what's causing it. They say it could just be what they call a "tumor fever" or it might be an infection. Either way, I'm hoping it goes away soon.

In other exciting news, I'm heading up to Boston on Wednesday to see if I might be eligible for a possible clinical trial there. I've already had the tissue from my biopsy sent to Massachusetts General Hospital, which they will be running some genetic tests on. I'm not exactly sure the nature of the clinical trial, but I will be sure and let you all know when I return!

Thanks for looking out for me! You sure know how to make a guy feel missed.

MichelleP's picture
MichelleP
Posts: 254
Joined: May 2009

I'm so happy to see you back! Sorry to hear about the fever, but it's good to know you're better now. And congratulations on the clinical trial too! Will you be away long?

You'll be in my thoughts and prayers! Let us know what happens please?

Jager's picture
Jager
Posts: 32
Joined: Jun 2009

Hi

I know it´s hard to deal with fever, but I´m glad to hear that you are already recovering from it, at least from the "heavy" part of it.

Wish you the best luck with that clinical trial mate, you are brave and taking the desicion to participate says a lot about your spirit and your willing to fight.

Respect mate

Cheers

Mario

looch969
Posts: 27
Joined: Jun 2009

Andrew,

So happy to see you post, so sorry about your fever. I also have been running a fever alittle higher than yours, mine goes from 100 to 105 within minutes. I have taken an antibiotic and Tylenol which seems to bring it down quickly. My second round of chemo is tomorrow, not to afraid because now I know what to expect.

I wish you the very best to LUCK in Boston, you are a fighter and are encourging for all of us.

Write Soon!

Tamie

looch969
Posts: 27
Joined: Jun 2009

Andrew,

You probably arent able to get to a computer yet, but wanted you to know Im thinking about you and wishing you much success in Boston! It is very odd the more things I read that you write to myself or others sounds so familiar to me. My entire family was born and raised (except for me) in Boston MA. All my aunts cousins etc... still live there and I moved to Georgia (Savannah) about five years ago and I receive my treatments from here. Where do you live? Maybe we have some of the same doctors? One of the doctors on my panel is Dr. Czenski from Duke but all the others are from Savannah.

Anyway keep positive its been two days since my second chemo and Im feeling pretty good so far, but if things happen the same as my first chemo tonight is the night that things will go crazy. (keeping a positive attitude it wont happen this time).

Best of Luck

Tamie

ARobben's picture
ARobben
Posts: 46
Joined: Apr 2009

Tamie,
Thanks for checking in. I got back from Boston on Friday and was in bed most of the day yesterday recovering from the trip. Feeling more energetic today though!

The trip went well. I really enjoyed the Doc there. He was very thorough in going over all my history as well as my previous CT and PET scans. They are going to be looking for a few genetic markers in my tumor tissue to see what the best next step is. The three types are EGFR, ALK and KRAS.

If there is an EGFR match, he could be treated with a pill while staying in Atlanta. EGFR treatment is a well established process and has been in use for a while.

If there is an ALK match he could be treated with a pill but would need to be at MGH to be in the clinical trial. Its a new treatment but showing very good results.

If there is a KRAS match, he said that there would be clinical trials starting in about 6 months.

He also is having his team re-analyze the pathology of the cancer since it displays characteristics of several different cancer types.

Without being too specific, my treatments started at the Hospital at the University of Pennsylvania, because I was living in Philly at the time for a job. Once I was diagnosed, I moved back home to my parent's place, in the suburbs and I get my treatments at Emory. My doctor there recommended checking out this doctor at Mass General Hospital, so I went up there for that. As much as it's within my ability, I'll go wherever it takes to try to kick this cancer's butt!!

looch969
Posts: 27
Joined: Jun 2009

Your news sounds very promising. Your attitude is confident which is very important! I have a scan this Thurday to see how the chemo is doing (just completed 2nd round) the scan is also going to tell how close the spots on back are to my spine. I wont know results until Tuesday - depending on results they will decide weather to stop chemo and do radiation to the back, which I really hope they dont, I would really like continue with chemo but we will see.

What was the doctor's name that you went to see at Boston? I would like to check him out.

Thanks,

Tamie

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