Heart Broken

My husband of nearly 38 yrs has Non Hodgkins Lymphoma B. He first got it 2014. went through 6 months of chemo and then went into remision, actually just went under the radar, tumors were too small to say for sure they were cancer.

It came back with a vengence in Jan. He has had 4 bone marrow biopsy's all showing bone marrow involvement.

since this past June he has had over 30 chemos. It is not working. His nurse said he was terminal but she said she is more direct than the doctor. The doctor tells us he should get into UCSF hospital for a clinical treatment. But without anymore treatment he had 6 months.

His lumps in his neck are growing. He says he can feel them growing. Now he says the front part of his neck is stiff. He is having coughing fits (lymphoma is in his lungs).

I totally feel like the doctor is just stalling for time, sort of speak. I hear most NHL patients die from pneumonia. He has already had 6 cases of pneumonia but nothing real recent.

It is so hard to keep his spirits up when I am so sad and see the changes.

How do I get our Oncologist to be straight forward with us and tell me what to expect??

My husband has been lying in bed for over 3 hours unable to fall asleep. This happens often. 

We have talked to the office and they said he can take melitoin with his ativan, but its not working.

Any advice??

Thank you, Patty 

Hi Patty, I'm so sorry you're going through this. There is an organization in SF called The Second Opinion, secondopinion.org . It is free. They saved my life when my oncologist wanted me to do high dose chemo and stem cell. Never did and am here 8 years later in good health. 

It may be too late for this, but I ate a very alkaline diet, stayed away from all sugar. I did colonics and energy work. My philosophy was in it to win it, whatever it took. 

Sending you much love and light, Casey

You must have faith in your oncologist. Time for a second opinion. Look to clinical trials now and talk to palliative care who will advise what to expect. All the best.^

On Nov 10, 2017 9:28 AM kittyoutlaw1 wrote:

My husband of nearly 38 yrs has Non Hodgkins Lymphoma B. He first got it 2014. went through 6 months of chemo and then went into remision, actually just went under the radar, tumors were too small to say for sure they were cancer.

It came back with a vengence in Jan. He has had 4 bone marrow biopsy's all showing bone marrow involvement.

since this past June he has had over 30 chemos. It is not working. His nurse said he was terminal but she said she is more direct than the doctor. The doctor tells us he should get into UCSF hospital for a clinical treatment. But without anymore treatment he had 6 months.

His lumps in his neck are growing. He says he can feel them growing. Now he says the front part of his neck is stiff. He is having coughing fits (lymphoma is in his lungs).

I totally feel like the doctor is just stalling for time, sort of speak. I hear most NHL patients die from pneumonia. He has already had 6 cases of pneumonia but nothing real recent.

It is so hard to keep his spirits up when I am so sad and see the changes.

How do I get our Oncologist to be straight forward with us and tell me what to expect??

My husband has been lying in bed for over 3 hours unable to fall asleep. This happens often. 

We have talked to the office and they said he can take melitoin with his ativan, but its not working.

Any advice??

Thank you, Patty 

I m sorry Patty,  I have 4.3Cm Lymphoma in the chest right in front of my heart ,between breast, also have cirrous of the liver and HEART disease.  Im falling fast! I hate it, i can not be me ANYMORE,  im hurtimg all the time if not 1 its 3, my stress level and reactions to.things have changed too dramatically, im alone. Im scared to death. I dont want to be sick.like this...Im ready to.go sooner than later.i dont think i can handle much more of.all.tgis pain