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Spleen involvement

Sandy Ray's picture
Sandy Ray
Posts: 97
Joined: May 2017

Well went to see oncologist today. I was expecting to hear  all looks good still, see you in 3 months. Instead he said showing a small area on my spleen. I had been diagnosed with NLPHL indolent Lymphoma and T cell rich B cell Non Hodgkins very aggressive Lymphoma . I finished treatments 6 rounds of RCHOP on 7/3/2017. After round 4 I showed NED and then had 2 more treatments.

I know it is not the end of the world but I am a little disappointed. My Oncologist wants me to make another trip to MD Anderson in Houston so that is my plan. I was so getting used to feeling good again. Oh well God has a plan. We will take one step at a time.

On a good note my son got married 2 weeks ago and I now have 2 granddaughters 2 and 3!

Oncologist thinks that MD Anderson may want to do a needle biopsy of the spleen. Anyone have any insight?

Thanks to everyone who participates in this forum. It is great to have someone to talk with that is there or has been there.

Sandy

OO7's picture
OO7
Posts: 282
Joined: Sep 2014

It may not be the end of the road as you said but definitely not what you wanted to hear.  Sorry.  I can't help but think you will feel good again, you just have to treat the spleen and get back on track again.  Good luck and you seem strong and positive which will help.

Congratulations on the wedding and grandbabies, what an absolute blessing.

Evarista
Posts: 255
Joined: May 2017

Ah, Sandy, so sorry to hear this. I don't have any wise words for you, except to hang tough.  Spleen is a busy place for both B and T cells and I guess it's not surprising to find involvement there.  Hope you have an easy go of it at MDA; best of luck with the biopsy, both procedurally and outcome-wise.

PBL
Posts: 182
Joined: Jul 2016

Sorry the news does not seem as perfect as we all wish it to be... Did your oncologist mention that spot on your spleen as being new or persisting/reappearing? Just thinking, perhaps there is a chance of some other explanation (inflammation/scarring?).

I sure hope that biopsy yields reassuring news!

In the meantime, it seems all those lovely family events should help keep you busy enough.

Please keep us posted.

 

illead's picture
illead
Posts: 836
Joined: Aug 2012

Thinking of you too and hope all goes well.  I know MDA is a little hard for you and probably will be even more so after the hurricane but you will be in the best hands there.  If you can find a hotel with a shuttle, it is a lot easier.  They are up and running at MDA now, Bill and I will be there the week of Oct 10.

Hang in there,

Becky

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3274
Joined: May 2012

I very disappointed at your news, Sandy.

This has to be related to the T-Cell presence, since I've never read of a case like this immediately after treatment for 'coventional' NLPHL.  I hope the biopsy will enlighten the doctor as to what they are really dealing with, and that it is cured rapidly.

max

Sandy Ray's picture
Sandy Ray
Posts: 97
Joined: May 2017

You guys are great! My new friends! Max I was thinking worst case it would be next PET scan I was shocked as well. PBL my spleen was double its normal size at diagnosis with lots of involvement. It has actually shrunk slightly but still pretty large . It showed clear after treatment 4 and this appears to be a new spot. Illead we went to MD Anderson after my intial diagnosis just a short plane flight away. We stayed at the Marriot in the medical district and used the shuttle was very convenient.

I feel great physically best in a year. Oh well! Thanks for all the prayers and well wishes. I will keep you posted. 

Sandy

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3274
Joined: May 2012

Sandy,

Spleens are of course removable.  If it is the focal point of your disease, ask the doctor if removal/debulking is a reasonable thought.  I have no idea myself on this issue, but would not be hesitant myself if my oncologist thought it best to do so.

I do not think surgical removal would be curative, but might make the chemo's work easier.  Debulking for many forms of cancer is pretty common; less so for the blood cancers.

max

skaterdad
Posts: 16
Joined: Sep 2017

Sandy. I am so sorry to hear about your recent Spleen involvment. It looks like we may be in the same boat there. Right now I am booked to go to MD Anderson on Oct. 16th. Hopefully I won't see you there and you will already be back home with an excellent treatment plan in tow that will get you past this speedbump.

Rexmax
Posts: 45
Joined: Apr 2017

I'm sorry to hear this, however you are correct God has a plan, and you will get Thur all of this, just keep the faith, and congrats on your granddaughters!

Rocquie's picture
Rocquie
Posts: 828
Joined: Mar 2013

I understand your disappointnent at your last check up. I'm glad you will be able to travel to MDA. 

I have a CT scan next week and an appointment with my doctor the following. After being told about a year and a half ago that my lymphoma was back, and having been on watch and wait since then, I'm interested to know what is happening inside me. If my disease continues to be stable, I will continue with watch and wait. Unlike some people, I don't want more treatment until absolutely necessary. 

I am so thankful for this group. I feel there is tremendous healing power in communicating with others who truly understand. 

Hugs and prayers,

Rocquie

 

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