Hodgkin's Lymphoma in Bones

Physical Health Cancer
1

I found out today that my 25 year old sister - Kathleen - was diagnosed with Hodgkin's Lymphoma for the third time, but this time it is in her bones - in her L4 vertebrate and in her right shoulder socket. I have read that HL is extremely rare in the bones which clearly concerns me especially since this is the third diagnosis in two years. Does anyone have experience/advice for HL in the bones?

Here is our experience with the disease:

On April 27th 2009, she was diagnosed with stage 4 HL right after her 24th birthday and conveniently one week before her 2nd semester 2nd year law school exams. She had been sick for months if not more than a year, but the health center at LSU kept giving her allergy medicine or a zpack, and finally when she went swimming (my two sisters and I all swam competitively growing up)and couldn't do two laps, she know something was really wrong. She went back to the health center and said she didn't want a zpack because she know something was seriously wrong. A nurse practitioner gave her a chest x-ray which showed her lymph nodes swollen and pressed against her lungs. This was on a Friday, and I believe she started treatment the following Monday.

That summer Kathleen was clerking at two different law firms in the afternoon while getting outpatient chemo in the morning. After the first round of chemo, a pet scan showed see was in remission on July 6th. We couldn't have been happier.

In December of 2009 right after she finished her Fall law exams of her 3rd year (she made up missed exams from in the spring in the summer), a PET scan showed the disease was back.

This time she would need an autonomous stem cell transplant and stay in the hospital for weeks recovering from the extreme chemo that would wipe out her immune system. The transplant took well, and the recovery went much faster than expected. I believe in was sometime in April that we found out she was in remission for the second time.

Over the last two months, we have been getting inconclusive results from a PET scan, MRI, and two biopsies. The doctor said from the second biopsy, she is 95% sure Kathleen has HL in her spine and shoulder.

Now we are back at square one - nervous and afraid. I just feel so bad for Kathleen; even if we can get this to go away she is always going to be afraid of the next PET scan. She has been watching her friends advance in life while she has been in limbo.

Does anyone have any experience with a similar case to ours?

Much appreciated,

Alden

2

Sorry to hear what is going on with your sister. My husband just finished his first round with HL (stage 3A) I am hoping it's our last. While I don't have any real advice for you at this point, I just wanted to offer my encouragement and support. Everyone here is really great and I hope someone can offer some insight for you.

Heather

3

Alden-
So sorry to read about your sister. Good God, three dx'es in such a short time, that's just not right.

If in fact she has relapsed Hodgkin's, confirmed by the biopsy, then I think what they will term it is primary osseous Hodgkin's lymphoma (POHL). Since it sounds like it's affecting more than one spot, then the term is changed slightly to primary multifocal osseous Hodgkin's lymphoma. Same thing, just multifocal, or multiple sites.

But this would only be the case if there is no other cancer anywhere else-- meaning not in her nodes, marrow, other organs, etc.

Either way, bone involvement in HL is very rare. Even in late stage HL, bone involvement as an extra-nodal site occurs to maybe 10-25% of patients.

Now, HL can affect the bone in a few ways: As POHL (singular and multifocal); simultaneously in bone sites and non-bone sites; and as a recurrence of the disease at so-called osseous sites. In order to be considered POHL, there can't be any cancer anywhere else-- in other words, the Hodgkins can't be systemic. Whether or not her current cancer is limited to these bone sites or it is systemic and has spread to these bone sites matters, since it will speak to her prognosis.

So do you know whether the cancer is in many places as well as in the bone, or just in the bone?

Ross