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Husband relapsed post SCT with very aggressive DLBCL

KElene's picture
KElene
Posts: 4
Joined: Dec 2012

Hi, I am new to the group and wondered if anyone has experienced the above subject matter? Any advice would be appreciated. He will be going in for Rituxin Christmas Eve. You can read my profile for more details. Thanks so much! Kristi

DadysGirl
Posts: 318
Joined: Aug 2011

Hi, I'm sorry to hear this. Where is the lymphoma now?

KElene's picture
KElene
Posts: 4
Joined: Dec 2012

Most of his aggressive lymphoma is in his gut. I know some is pressing on his ureter. He has some in his chest and also his neck. The PET scans showed high SUVs (14-18). This is the worst he's been and we are both so very scared. I don't think they are going to do chemo because his CBCs are so low--they don't think he could survive it....he's had blood transfusions and platelets. He goes in for Rituxin (2nd time currently) tomorrow 24th from 9a-4p and then again a week from then. They are going to do a CT guided biopsy to get more detail and subtype, etc., but that hasn't been scheduled yet. He's had it back since about a month ago. It's so hard to see him this way. He's on prednisone, pain pills, asthma meds, antivirus for mouth sores, etc. He's very weak and losing his voice. He doesn't eat much and when he does he pays for it because his gut aches. Doesn't have much in the way of BMs. Praying so very hard. It's even more difficult with the holiday season upon us.

allmost60's picture
allmost60
Posts: 3167
Joined: Jul 2010

Hi Kristi,
I'm so very sorry your hubby is going through all of this. I have FNHL grade2-stage3-typeA and have not yet finished my 2 years of maint rituxan. My biggest fear is having a recurrance of cancer like your husband is going through. My most heartfelt prayers and positive thoughts will be with you both. Maybe the rituxan will work this time...I pray so!
Best wishes..Love Sue.
(FNHL-2-3A-Dx6/10)

KElene's picture
KElene
Posts: 4
Joined: Dec 2012

Yes, he was diagnosed in 2005 with low-grade follicular NHL. Good wishes to you and yours!

Go_go_Gi_gi
Posts: 84
Joined: Aug 2011

Kristi,
So sorry your husband and you are going through this now. I pray the Rituxan will work efficiently to shrink all of the tumors---our thoughts are with you---pray for your peace and strength--

Hugs and good thoughts heading your way -Susan

DadysGirl
Posts: 318
Joined: Aug 2011

I will respond to you soon... Was with a friend in ER later sent oncology unit where my Wonderful Dad was treated who passed away recently.. I had a very difficult day felt like was going to faint along with racing heart it was very uncomfortable.. Just got home from being there for 12 hrs.. The memories were just too much to handle.. The SUVs you mentioned are much lower than my Dads... I will write to you soon ..if you want you can read my other posts for comparisons.. One ? Why is he on asthma meds? Does he have asthma?

KElene's picture
KElene
Posts: 4
Joined: Dec 2012

Husband had bloods drawn today and his results were so low that they admitted him to the hospital.  His platelets were 1, his WBC 0.4 and his hemoglobin 7.something?  He is getting platelets at the hospital.  They really are not sure why his bloods are so low....same situation occurred 12/12 and was admitted to the hospital for blood, etc.  He has had two rituxin treatments 12/17 and 12/24, but I think they are hesitating with too much chemo because of his relapse and low blood counts.  They will be doing a biopsy of a neck lymph node while iin the hospital (if his platelets get up and keep up?), to determine for sure the most detailed and accurate diagnosis.  They are calling it DLBCL right now.  He is on asthma meds because he has asthma.  His oncologist said 20 is the highest SUV he's seen on PET scans, so I was very concerned when my husbands SUVs from his most recent PET scan were 16.  I am very sorry about your father, DadysGirl.  We have a 6 year old and I think the severity of it is really starting to set in with her....she was crying today because "Daddy's sick."

yesyes2
Posts: 461
Joined: Jul 2009

Hi KElene,

I am very sorry to hear about your husbands relapse.  And I hope the doctors can soon get his blood levels in a more manageable range.  I'm sorry I can not help with your primary concerns but I wanted to share my history with high SUV levels.  I had a very rare and agressive B cell and T cell lymphoma.  My first PET, given after an intital 2 rounds of Rituxan was 19 to 22 SUV.  Doctors did not know how to treat but I was ill so they started Rituxan before the PET could be scheduled.  I went into remission but that only lasted less than 1 yr.  On my first scan upon recurrance my SUV was 35 to 37 and again very agressive B cell.  Although not DLBC I was treated with RCHOP and after 2 cycles was in remission.  I will be coming up on 3 years remission in March.  I wanted you to hear of very high SUV and a very good, so far, outcome.  If interested you can see my user profile.

I am sending healing thought out to you, your husband and lovely daughter.

DadysGirl
Posts: 318
Joined: Aug 2011

I'm very sorry about what you're going through... I was concerned about asthma medications as my Dad was treated with medications similar due to lung involvement. They can't explain my Dad's situation how he was doing so well and how things took place so fast... So don't compare it to my Dad...  Believe in God and pray a lot that's what we did and still at the end whatever is planned for us by God will happen but at least we give it all we can, pray pray pray and search for options that are available and ask for Guidance from God to choose the correct route... I'm sorry I couldn't write earlier, we are stillwith friend on oncology unit same nurses who keep talking of my Dad how they have all loved him and thought greatly of him in the shorttime they've known Him... My Dad was truly a wonderful person... Today is His bday... :( we had spent it in hospital last year and today without Him unfortunately... I don't have any hopes wishes anymore from life as life really seems liklong longer version of a dream and a torture without my Dad...

However I wish for all that have hope and there is always hope from God if you're living no matter how awful the situation may seem, wishing your husband and others for a cure from this awful disease... 

Best regards...

KatMat
Posts: 62
Joined: Jul 2012

Hi KElene,

I am very sorry to hear what you are going through.  I can totally relate at the moment because my husband will not win his fight with CLL that transformed to a very aggressive Large Diffuse B Cell Lymphoma.  Currently my husband receives weekly rituxas along with taking predinsoe and etoposide to slow the tumor growth.  He is doing OK.  some good, some bad dasy but he is still here!  My thoughts and prayers to you and your family.   

 

Katie

DadysGirl
Posts: 318
Joined: Aug 2011

Can't they do sct? Or 2 more rchop?

Marydutton
Posts: 14
Joined: Feb 2013

Just checking to see how it was going for you. I think my ex husband has been diagonsed with the same thing. SCT in 2 weeks. 

DadysGirl
Posts: 318
Joined: Aug 2011

How are you and your husband?

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