Does the Doc ever call with good news?

Hey all,
I had my PET scan yesterday and was a bit surprised to get a call from my oncologist this morning. I figured it was not a good thing that she was calling me so quickly.

It turns out that the PET scan showed multiple spots in my chest, a couple in my abdomen, and some bone involvement in my spine. She is still waiting for the results from my upcoming bone marrow biopsy on Friday, but at this point she is going with Stage IV-A Unfavorable. I am now looking at 12 to 16 cycles of ABVD with no radiation.

I am wondering if the fact that I have bone involvement increases the chances of the bone marrow biopsy coming back with more bad news. What exactly are they looking for with the bone marrow biopsy?

Hi,

Sorry to hear about your news. The bone marrow biopsy is going to show whether the cancer has moved in to your bone marrow or not. I don't know if your oncologist telling you that you had some bone involvement increases the chances of it being in your bone marrow or not.

Please keep us updated on your progress. Are they putting you under for your bone marrow test?

Gregswife,
Thanks for your post. I am doing the bone marrow biopsy at the hospital under sedation. My oncologist said she could do it in the office but at my age it will probably be quite painful.

Ryan,
I had a hip fracture and that is how they found the non-hodgkins. It did not mean since they found it in the bone that it was in the bone marrow always but mine was. They did the bone marrow biopsy and they knew it was in it before the lab took a look at it. I guess it looked really bad. I am hoping this is not the same for you..Keep us posted.Lori

Well the good thing about ABVD is that if your cancer responds to it you will be in remission by your 4th or 5th cycle the bad thing is the side effects I didn't have any of the normal nausea and losing my hair I have numbness and shortness of breath and they stopped my chemo after 11 cycles because of these problems. Good luck and I hope that bone biopsy is clear.

Thanks for your posts guys. I will provide an update when I have more information.

Hi Ryan,
So sorry that you received this news. What did the dr. mean by bone involvement in the spine? I was under the impression that they can't see if it's in your bones without a bone marrow biopsy. If you have lymph nodes that are swollen in both above and below the diaphragm with out it being present in your organs or bone marrow then it should be Stage III. Even if it is Stage IV, it is still highly beatable, you just have a longer chemo treatment.
That is great that you are being sedated for the bone marrow biopsy. My doctor did it in the office and it was very painful for me. I was told that the denser your bones, the more it hurts.
Like Ms. P said, I too have heard many cases where the chemo does it's work in Stage III and IV so well that when you go for your scans half way through, you don't have to finish with the rest of the treatments.
Please keep your head up. I will send you some positive energy your way. You will get through this and beat it. Just take a deep breath and get ready for the chemo.
Get some rest and please keep is posted.
Hugs - Deana

Thanks for the positive energy Deana,

The PET scan actually shows that the lymphoma has moved to my vertebral column. She said that you cannot see bone marrow involvement on PET, but if the cancer has moved to the periosteum (outer covering of the bone) or bone itself then it is visible. Basically the cancer has spread to another organ (my bones) which gives it the stage IV designation. I looked at the PET images myself and it looks like 10 different thoracic and lumbar vertebrae are involved. She did say that the bone marrow biopsy is still needed because this does not tell us if the marrow is involved as well.

I am not looking forward to the bone marrow biopsy but I'm very anxious to get the results at this point. We seem to get more bad news with every scan or test and I will be happy to have the last test out of the way, no matter the result, so we can get down to business. If I am going to have to grit my teeth through 8 months of chemo then the soon I get started the better. I'm ready to rock and roll.

Ryan:
Through all my reading and research my findings have been that Hodgkins lymphoma has a high cure rate in every stage even in stage four and unfavorable. The take I get (and I welcome first hand knowledge here) is that unfavorable means longer treatments and possibility that the cure will take a second round of treatments and possibly a different type chemo. New England Journal posted an article that stated that studies indicated that if the first round of chemo didn't do the trick that the second generally did.

You keep your chin up and remember that attitude is a tremendous bonus in this fight. My daughter is fighting for herself and the baby she is carrying, but her attitude through it all is absolutely amazing. She is teaching me so much. I saw a phrase that said..."We spend our time teaching our children about life, and our children in turn teach us all about living life".

All that said...this all scares me to no end. She is my only child even at 26 she is my baby...after 8 chemo treatments she will stop for a month while she regains her strength and they will induce labor a few weeks before her due date then afterwhich she will have four more threaments then have radiation...I just want the end result to be my daughter cured of this monstrosity. And I pray for the same for all of you too!

Grandma2b,
Thanks for the kind words of support. I can't imagine how hard thing would be if there was a baby in the mix. I applaud your daughter's courage and wish you both and the baby the best. Please keep us updated, I would love to celebrate the baby's birth with you guys when the time comes.

I was looking for this titled post after my oncy called Sunday morning.
"Not so good news, I said non-chalantly?
"On the contrary," he replied."The dense spot in your lung disapated, and your red/white cells and hemoglobin are NORMAL."
"Fabulous! I knew I was feeling better." I replied.

Drs. CAN call with good news.
Peace to all of you.

Ryan, ask your doctor about the possibility of switching from ABVD to BEACOPP, since the latter supposedly has higher success rate for later stages. BEACOPP is more intense and takes longer (it is a 3-week cycle), but it's manageable. I've just went through 8 cycles myself. Best of luck to you, you can do this!

Hannah,
Thanks for the advice. I am about half way through the ABVD regimen and am having a PET scan next week to see how effective it has been. My guess is the Doc will be switching me to BEACOPP if the scan results are not what she is wanting.

Ryan, I had the bone marrow sample done, without sedation. Like a good torturer in Tudor England, the doctor showed me the instrument first. It didn't hurt, he used local anaesthetic as he went in, there was just a feeling of pressure, then he showed me this half-inch core of slightly bloodied bone marrow, and it was over. It remains, however, the least fun I have ever had without trousers.
I hope yours proved to be worth having.