Husband relapsed post SCT with very aggressive DLBCL

KElene said:

Location of DLBCL
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.

KElene said:

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

KElene said:

Platelet transfusion

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."

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 said:

Hi KElene,
I am very sorry to

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

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

KElene said:

Platelet transfusion

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."

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.