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Not so good scan report

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

Hi all,

The Pet Scan showed a little progression of the cancer rather than a reduction after the 2 inpatient R-ICE treatments. I have a very aggressive lymphoma that is persistent and tenacious, and not responding to treatment the way we need it to for me to get better. I told my doc that after all it is made up of my mutated cells, so it’s got a bit of my strength. He laughed. I will continue to stay strong, while we figure out what chemo mix the cancer will respond to. Now the Stanford docs want me to do the more intensive bone marrow transplant that requires a donor. They want me to have a new immune system. I don’t fully understand the why, but will continue to ask questions. While I’m facing a little setback, with more intense treatment, I am determined to get through this. I am more determined, more persistent, more tenacious, and stronger than the cancer and I will kick it to the curb. It’s just taking longer than I would like. But I can do it. I have received incredible love and support from my amazing community, my friends, and my family. This will give me the additional strength I need to get through this.

I am back in the hospital for additional higher dose chemo. Now it's R-DHAP. I'll get 2 or 3 of these, and then another scan. I also get a blood transfusion as my counts are very low.

I vascillate between fear, anger, and hope. The progression of the cancer after all the treatment is very scary. And I'm pissed that the cancer won't go away. But I know there are other treatments, and we just need to find the right one. It sucks, but I'll get through it.

Reading everyone elses experiences here gives me hope. Many of us experience setbacks, and win in the end. And your support and prayers help too!

love and hugs,

liana

COBRA666's picture
COBRA666
Posts: 2418
Joined: May 2010

Liana,

  You will beat it, but you will have to push these Drs. Be your own advocate as I know you will. Just never give up and remember to push them. Raise heck to get the bottom line answers if you have too. John

allmost60's picture
allmost60
Posts: 3177
Joined: Jul 2010

Hi Liana,

  I feel your frustration and I'm so sorry it is taking time and experimenting with treatments in trying to slow your cancer down. My heart hurts for you! It's so hard to keep the faith and think positive when set backs happen. You are fortunate to be at a very respected cancer clinic as Stanford. Lisha lives very close to where you are receiving treatments. I'll keep you in my daily prayers and pray your doctors find the right drug combinations to kick this cancer to the curb!  Hang in there sweetie...my positive thoughts are with you.

Much love...Sue  (FNHL-2-3a-6/10-age 62)

jimwins's picture
jimwins
Posts: 2085
Joined: Aug 2011

I'm sorry you are experiencing a setback.  You are strong and your attitude is wonderful! Just know we are here for you and "hissy fits" are allowed :).  I loved your comment about the mutated cells :).  

Sending you hugs of warmth and strength filled with postive energy,

Jim

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 1217
Joined: May 2012

Liana,

I must echo Jim and say that your spirit in this fight is wonderful. The docs still have these tricks up their sleeves, so there is plenty of cause for hope.

max

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

Thank you for your kind words of support. It means a lot right now. I know I'll get this thing in the end, but I hate the way it robs me of time. I had to come into the hospital unexpectedly this time, and so will miss my daughter's birthday party tomorrow. I'm going to see if they might let me out for a couple of hours. My chemo should be done by then. At least I had got all the shopping and prep done before my doc called me and said I need to go in for treatment right away. The grandma's, my cousin, and my sister have all graciously offered to help dad pull the party off.

And while I'm pissed at losing time, better that than not being here at all. I am grateful that my Doc responds quickly. I had my Pet scan Wed, and thurs morning he's calling saying I need treatment asap to get a handle on the progression. No waiting here.

love and hugs,

liana

COBRA666's picture
COBRA666
Posts: 2418
Joined: May 2010

Liana,

  That is great news to hear. Hopefully you will get your answers. If not you may have to push them. I know you will do that. Sounds like you have a Dr. that is helping as much as he/she can. Love hearing that. John

hiccup (not verified)

Liana,

 

Honestly, I'm pissed right along with you. I'm sad to hear that R-ICE didn't do the trick... I never did a pre-transplant scan to know one way or the other. Cancer is such a terrible, confusing disease. It makes me sad that we have to deal with this junk-- all of the good people on here.

 

I'm thinking that they are hoping to do an allogeneic transplant.. a part of that is graft vs tumor effect, which can possibly attack your cancer in a different way. The donated cells could restart your immune system to attack the tumor itself. Whatever the path you end up following, I hope it spanks that cancer so you can take a break!!!

 

-Nathan

NANCYL1
Posts: 263
Joined: Jun 2012

Liana:

I have just read through your latest post and am sorry to hear that you have had a little setback.

After reading your very strong words, I am sure that you will kick the damn thing to the curb!

Nancy

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

Thank you for your words of encouragement and support! I will get this thing. It's just a hard and frustrating journey. I'm looking forward to getting some better news and moving forward with the transplant. I see that as the final hurdle. If I have to do radiation after that, it doesn't seem as daunting as all that will have come before.

Nathan, I believe you have the right understanding of the reasoning of the alleogenic transplant. I just so wanted to be able to do the autologous transplant. Sigh. And I was of the mind that the high dose chemo would wipe it all the cancer, and that the transplant was for the purpose of rebooting my immune system, not to fight the cancer, which should be gone. But now that this cancer is proving to be so aggressive, I guess they want to give me a better chance of being able to fight it if any remains after the all the chemo.

Hope your feeling better everyday!

love and hugs,

Liana

epicc's picture
epicc
Posts: 136
Joined: Nov 2012

Liana

please stay strong. I know in time all will work out. My husband's good friend had a bone marrow transplant that he received from his sister. Her is doing amazingly well. He is back to work (he's an ER doctor) and leading a normal life. He too had a very aggressive Lymphoma.  I will pray for you.   Keep up your great attitude.  You are truly an amazing person.  Much love. Emily

illead's picture
illead
Posts: 566
Joined: Aug 2012

So sorry Liana, it is news we did not expect.  We agree though that you are in good hands at Stanford.  Bill's cancer center is affiliated with UC Davis and they really seem to be on top of all the latest and they confer together.  We are sure Stanford is the same.   A friend had brain surgery there and she was blown away by their facilities and said that the cancer area was huge.  Your positiveness is amazing and it's what you need to hang on to.  Our thoughts and prayers are with you and your family.....keep strong, you're going to beat it!  Bill and Becky

anliperez915's picture
anliperez915
Posts: 756
Joined: Sep 2011

Liana attitude as they say can be everything and your attitude shows that you're going to kick this cancer's butt! You go girl, stay strong, you can do this!!! Sending you a lot of hugs and prayers...

Sincerely,

Liz

Machir
Posts: 32
Joined: Mar 2013

Liana,

I don't really know you but if I had to pick a coach to get me through whatever my next bout is with the evil C it may well be you.  When I read your post I vacillated between anger, heart ache and a strong sense that you will find your way through this.  I like that you are seeing Stanford docs.  They should be on the front of treatments.  Stay positive young lady.  This is a time of medical miracles.  I'll be praying that yours arrives soon.  Prayer, love and hugs your way.  Mac

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