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Son diagnosed with Advanced Stage 4 Hogkin's Lymphoma

Tracelynn
Posts: 2
Joined: Feb 2017

Hello,

I am writing here as I am looking for advice, stories, anything that will help my family and I through this.

My 31 year old son was diagnosed with Advanced Stage 4 Hodgkin's Lymphoma in December.  He just finished his 4th session of ABVD and has 8 more to go in this course.  It is considered palliative at this time. Once this course is finished they will do another Pet Scan and if the chemo stopped the cells from continuing to grow so fast the doctors will then decide on what to do next. 

I live in Michigan and my son is in Texas.  It is so hard being this far away from him during this.  I have gone to Texas to see him once since his diagnosis, because the funds to do so aren't easy to come by. We talk and text and discuss how he's feeling, physically and mentally, and about what else is going on in his life.  

I feel guilty.  Guilty that he was so sick by the time treatment was sought.  Guilty that I can't be there.  Guilty for him being sick.

What can I do to help him? What does he need most right now? 

Thanks for listening,

Tracey

 

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3364
Joined: May 2012

Tracey,

Welcome to you.  Hodgkin's Lymphoma (HL) is virtually always beatable, from any stage.  Stage IV differs only in taking a little longer to put nto Complete Remission (CR). I myself began with Stage III that was widespread everywhere, except in a secondary organ, hence my staging at III.  There are only five routine forms of HL, whereas there are around 40 commonly recognized forms of Non-Hodgkin's, which is much more common and, in many cases, more dangerous. But HL does vary in aggressiveness by substrain.

I suspect your son is scheduled for 6 "cycles" of ABVD, which equals 12 "infusions" (treatment sessions).  I did 12 infusions of ABVD myself.

It is normal protocol to do a PET after the first 3 or 4 infusions to check progress, and then adjust as necessary.

Very likely, the PET will show that the disease is being beaten back, and things will continue as scheduled.  Almost definitely, the doctor is NOT expecting the PET at this time to show the disease all gone.  He will just be looking for progress in killing it off.  Any substantial reduction in tumor size will be viewed as success.

I hope you will invite your son to join us here himself, or at least get him to read the responses you receive.

There is no reason to feel guilty. Cancer is not anyone's "fault":  not his, not yours.  It is unknown what causes lymphoma, but it is not linked to diet, etc, in any significant way.  There are no known genetic predispositions, although kids with parents with lymphoma are a little more likely to get it themselves. Fat people get it,  skinny vegans get it.  Smokers, non-smokers.   Old, young.  Joggers and couch potatoes.  It just occures at random.

ABVD effects increase with more doses, and can become dibilitating; I slept 15 hours a day during the later part of my six months of treatment.

There are no guarantees, but very likely he will come out of this ok.  Do share this with him,

max

Hodgkinninja
Posts: 14
Joined: Jan 2017

Hello, no need to feel guilty.   Your son is alive and there is help keep your head up and keep walking forward one step at a time even if it's just baby steps I hope we can help you with any questions and support .

Tracelynn
Posts: 2
Joined: Feb 2017

Hello,

Thank you for your responses.  I have asked Philip to join us here and I'm hoping that he will. I think it would help him.

He is considered advanced stage 4 because it is in his lymph nodes, bone marrow, liver, spleen, stomach, breast bone and pelvic bone. I think I'm missing a few places too. It's so overwhelming. And B because of the night sweats and extreme weight loss I believe. He is down to 118 pounds.

I'm trying to take everything one day at a time and he is doing the same. 

He has been drinking ensure to try and keep his weight steady. Are there other things that will help as well?

Thanks!

Tracey

 

 

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3364
Joined: May 2012

You are correct: that much organ involvement is very rare even in widespread Stage 4 disease. But I will repeat that the vast majority of even Stage 4 cases respond well.

It is reasonable to believe he will get much too weak to work or function until chemo ends. Night sweats and weight loss are referred to in Lymphoma as "B Symptoms," and indicate aggressive disease.

Food fetishes/cravings are common on abvd. Tell him to eat whatever he wants to eat, within reason . I craved French fries for months, and ate little else besides Ensure. Carnation Instant Breakfast is in many flavors and he might like that also.  Most docs say some calories and intake are better than none, regardless of source. My oncologist told my wife, "If he will eat it, give it to him."

Pulling for him,

max

lindary's picture
lindary
Posts: 679
Joined: Mar 2015

Max has it right. He needs to eat whatever he can keep down. For some reason starchy food seems to be the preferred foods. I couldn't swallow the french fries or potatoes. My go-to-food was mac 'n cheese. 

Also don't feel guilty you can't be there. Write, call when you can. Get other family & friends to write. I got so many notes & cards the first few months it made me feel like they were all around me. Whenever I felt down I would pull out some of the cards & notes and read them. Even text messages can help him to know you are thinking of him. 

cathtx
Posts: 7
Joined: Jul 2010

I also had stage IV hodgkins...I had it on both sides of my diaphragm and in my heart and required a pacemaker prior to starting my ABVD. I am now about to celebrate 7 years as a survivor! I was 41 when I was diagnosed. I agree with the above posters...I ate baked potatos for the entire time I was going through chemo. it is just what sounded good and I was able to tolerate them. Also, I was "crawling to the finish line" with my 6 cycles...It took me about 2 months after I finished to start to feel human again and then many more months (maybe even a year) to be rid of all the side effects. Have faith and try and stay positive. Stay off weird internet sites that give bogus or unproven advice. it can only scare you. Good Luck!

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