3.03.2017

The Reoccurrence of Hodgkins Lymphoma

Occasionally I worry I "over share" my life.  In person and online. But then I remind myself how much strength and support comes from shared experiences.  I appreciate when asked if retelling the story or giving information is difficult.  Happily it is not.  I did struggle talking about the actual chemo experience towards the end and would start to dry heave while explaining. But there is no trauma when asked how are things going or what is going on? I am always happy to tell and always happy to answer questions

When diagnosed, I was told Hodgkin's Lymphoma has a near 90% cure rate.  This gave me strength and hope.  The doctor explained the treatment.  6 months of 12 chemo doses administered every 2 weeks. The chemo cocktail would include 4 drugs ABVD. The B can permanently damage the lungs and they did not anticipate using it the entire 12 treatments. The goal was 4-6 doses. Following the 6 months they would decide if radiation would be needed and if the HL comes back or is found in the marrow, a bone marrow transplant would be necessary. With all these options and treatments available that is how they reach such a high cure rate.

Treatment started and Dr. J kept a close watch on my lungs. After 2 treatments of ABVD he determined there would be permanent damage if we continued the B drug, so we stop using it.  After 4 treatments I had a PET/CT scan.  This scan showed no activity they previously saw.  They did see some activity in my knee but through biopsy found no cancer cells.  I was considered to be in remission. 

Fast forward, January 18th, my last treatment.  February 3rd I went skiing.  That night I felt a very familiar pain in my chest.  Hoping it was just sore muscles or even an injury from skiing, I knew the impending PET/CT scan would show activity. The scan was February 9th and the results showed as expected activity in my breast bone and in the right axillary lymph node. Showing activity in the lymph node Dr J wanted a biopsy. February 14th I had the biopsy. Preliminary results said it was a reoccurrence of HL. It took a week for the full confirmation but by that time we had and an appointment with the Transplant team at LDS hospital, February 23rd.  

The Transplant team explained in detail the process.  Here is a condensed version; First I need to get back into remission.  I will do as many rounds of a more intense chemotherapy as needed until remission. It could be as few as 1 or as many as 6? Dr. J has given us the choice between two different chemotherapy options that can get us to remission. ICE and GCD. ICE has been around for a long time, is proven and is most often used. It is also VERY hard on the body.  Lots of side effects and must be administered in the hospital over a few days every 3-4 weeks.  GCD has been around for about 5 years.  It uses one of the drugs "C" from ICE.  It is given outpatient and does not have as harsh of effects.  It is still intense and appears to have the same success rate as ICE. We plan to use the GCD and if after the first treatment or two we don't see the results we expect will switch to the ICE.  

Once in remission they can harvest my own bone marrow stem cells. I am most dreading this part because to get as many stem cells as possible they will give me the biggest shot of neupogen I have ever had. (insert tears) Harvesting the stem cells is about an 8 hour process.  Once they have the stem cells they will admit me into the hospital and give me a "lethal" dose of chemo. This is intended to kill everything, any residual cancer cells as well as my bone marrow which would be lethal.  That is when they will "rescue" me with my stem cells and bring me back to health and hopefully meet the goal of curing the cancer! 
If for some crazy reason a single cancer cell survives either in the stem cells or through the transplant and the HL returns there is the option of a donor bone marrow transplant. 

It is amazing that there are so many options, solutions and back up plans to the back up plan. I have spoken with many transplant survivors. I have had many people tell me success stories of people they know. Hearing these stories make me more confident in this process. I am grateful to hear each one. I know there will be hard days ahead BUT I have been given the opportunity to gain a little strength back, to feel almost normal for a few weeks. It makes me optimistic that I won't feel crappy for the rest of my life, this too will pass. 

3 comments:

Spencer said...

The Nelsons love you guys and are so glad that there are still so many options. We're praying for you (Reese has said some great prayers for you) and excited to see you soon in CR.

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Powla said...

Oh Sara, my heart really goes out to you through these hard, hard, HARD times, I know how I feel when I am sick, depressed, and not myself. The worst part for me? Not being myself. I miss me. I don't like this new version of me and I want the old me back. But... I also want to be the best me that I can be and can that happen if I don't go through these hard times? I don't think so. So I try to stay focused on keeping the hope alive. That is the key for me. Once hope is lost, then we lose the main fight and I am not a loser. You are not a loser. We are both too stubborn to actually lose hope completely. So when times get dark and the light of hope fades a bit, remember it's just for a moment. Keep breathing in and out, fighting those internal battles, and the sun will rise and the light of a stronger hope will emerge. I love you and have you constantly in my thoughts and prayers of my heart. My soul loves your soul. You are a beautifully strong woman who is going to shine brighter than ever before once this is all behind you. Keep hanging in there because I am really looking forward to what happens after your metamorphosis is complete! Hugs, Paula