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update, checking in, reconnecting

lianadw's picture
lianadw
Posts: 72
Joined: Jan 2013

Hi Eveyone,

I'm sorry I'm not the best at staying connected and responding to everyone. I respect you all so much, I appreciate the shared wisdom, and I really think you are all a wonderful, caring, and brave group of people. I just run out of time for checking posts and responding. So I occasionally read the posts. and then rarely respond, although I often would like to.Others usually say what I would have said anyway. Great minds think a like.

As to my update. After 6 rounds of R-Chop, 2 rounds of RICE, and 2 Rounds of RDHAP, the cancer contnuied to progress.  The R-CHOP was manageable but the RICE and RDHAP wiped me out. So I've been recommended for a clinical trial at STanford, which sounds really promising, but it's taking forever to get me there. MY doc was too slow in making the referral and following up. My last RDHAP was Aprl 10th. I became very symptomatic May 10th and ended up in the ER and getting a round of Gemzar and Oxiplatinin. That helped with the symptoms. So now I'm another 4 and 1/2 weeks out from any treatment. I see my new doc for the new treatment next monday June 10th. I pray they start my treatment on the17th. I am so symptomatic, and they are giving my drugs to deal with the symptoms until treatmen can start.

If the cancer responds to the new treatment, and i'm sure it will, we may have potential match for the bone marrow donor, yay!

This is a crazy ride wer'er all on. If any one else has had primary mediastinal large b cell lymphoma and experienced anything like I have please share!

Nathan, would love to hear how you're doing. I hope your well and finding a treatment that works for you!

Love, Light, and hugs to all,

Liana

illead's picture
illead
Posts: 544
Joined: Aug 2012

I have been thinking about you and worried, but had no idea you were having all those problems.  You sound determined but know it is very difficult for you and your family.  I hope you get to Stanford soon, that is the best place for you to be.  I hate to hear that everyone is dragging their feet while you are suffering.  I know how tough the symptoms are to deal with.  Don't give up being the "squeaky wheel."  You're a fighter, we are all thinking of you and we're here for you.  Don't worry about posting, I know how difficult it must be when you are so sick.  Hang in there and keep fighting Sweetie.  Becky

Rocquie's picture
Rocquie
Posts: 499
Joined: Mar 2013

I am so, so sorry to hear that you are having so much trouble getting on top of your lymphoma. I can only imagine what you are going through and that is probably not even the half of it. Maybe the clinical trial at Stanford will be the answer. I sure hope so.

You sound so strong and positive and I sure respect you for that. I'm glad they are able to give you drugs to help with symptoms until your treatment can begin. I am so thankful for blood donors and bone marrow donors. They have a very special place in my heart. I hope yours works out for you so you can kick this once and for all. 

I am glad you posted this. Now I can add you into my prayers.

(((Hugs)))

Rocquie

 

girliefighter's picture
girliefighter
Posts: 214
Joined: Mar 2013

I will be thinking of you tomorrow/ today on your appointment to meet your new Dr. It will be great to get some fresh views and opinions on things for you. I wish you all the best and hope that you can enjoy atleast a few moments out of each daySmile.

XXXOOO

Carie

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