Decisions, Decisions, Decisions

Rick began the radiation treatments the next day.  Since it was his neck, they made a “cage” for his head.  This was to immobilize him during the treatment.  The first time round with radiation, they marked his body with permanent ink in order to have the right coordinates for the radiation beam.

These were better days for Rick.  He was making his way back to us again.  His personality would peep through.  He began using the walker and his spirits flew to the sky.  We could see a smile on his face more often and his kindness, warmth and jovial self were more evident.

Jack was playing baseball by this point in spring.  Karen and Paul would take him to practice with his cousin, Matt.  Rick would talk to Jack about his coach, practice and his games. He would give him the “father pep-talks” before leaving for the games.  This warmed my heart because this was the real Rick, I knew and loved.

Rick’s body was seeing some of the side effects of the drugs.  He had developed a steroid hump at the base of his neck and the steroids were also puffing up his face.  When you added those things to a total lack of hair, he was pretty self-conscious about being seen in public.

Johns Hopkins called us about setting up an appointment for Rick to see about their clinical trial. The date was set and we drove up with Steve.  They took Rick in to examine him and we waited in the waiting area.  This was the land of the diagnosed; we were sitting with people of all ages, some without hair, some with hair, some with those deep, dark circles surrounding their eyes, some were walking, some were being wheeled in.

Steve said, “You know this should have been me.  I would love all those alternative therapies.”  He had recently attended a support group for myeloma patients and their families.  He had a wealth of information on the subject now but knew Rick wouldn’t go for any of it.  “Yes, Steve, it should have been you.”  We laughed.

A little while later, they brought us back to Rick; then we moved into the conference room to meet with the doctor.  This was a woman who seemed deeply compassionate.  The doctor explained that in this clinical trial  the patient was given a total body irradiation; this was a one shot deal.  You can only receive that type of treatment once.  The next part of the treatment would be to do a bone marrow transplant from a sibling who would match Rick’s This would be followed by high dose chemo-therapy.

Total body irradiation before bone marrow or cord blood transplant

Radiation therapy is often part of the transplant preparative regimen — treatment used to prepare a patient for a bone marrow or cord blood transplant. Total body irradiation (TBI) gives a dose of radiation to the whole body. TBI can destroy cancer cells throughout the body. It also destroys the immune system so that it will not attack the donor's cells during the transplant.

TBI can reach cancer cells within scar tissue or other areas of the body that chemotherapy may not reach. However, the dose of radiation must be low enough that the body's healthy cells can recover. For this reason, TBI alone cannot be used to destroy large numbers of cancer cells. Instead, the transplant preparative regimen uses TBI along with high-dose chemotherapy. (Some preparative regimens use only chemotherapy and do not include TBI.)

http://www.marrow.org/PATIENT/Undrstnd_Disease_Treat/Undrstnd_Treat_Opt/Lrn_Other_Treatment/Radiation/index.html retrieved 2/5/2011

Overwhelming!  I don’t want to do this at all.  God make it go back.  Please make it go back to when we didn’t have these issues.  I don’t want to lose him.

This was our first option to consider for treatment.  Next, we were off to NIH (The National Institute of Health) to hear about their clinical trial.  We drove up on another day.  It was pretty much the same type of experience.  The protocol here called for Rick to have the bone marrow transplant with a sibling donor match.  It did not call for the total body irradiation which meant that if Rick’s body rejected the bone marrow of one sibling; he could use his own bone marrow on a subsequent try.

A transplant that uses another person’s bone marrow is called an allogenic transplant.  This type is preferable because the patient is receiving marrow that doesn’t contain cancerous cells.  The other type is an autologous transplant which uses the patient’s own marrow.  It is taken from the body and irradiated and then returned to the body.  A high dose of chemo therapy is used to wipe out remaining cancer cells. Since it is the patient’s own marrow, there is a greater chance that the cancer will recur.

The third option was to continue with the VAD (Vincristine Adriamyicin with Dexamethosone) treatment that he was currently on.  There was a limit to how long he could be on this type of chemo.  The Adriamyicin does damage to the heart and the Dexamethosone staves off the swelling but we could already see that Rick was feeling the pain on the third day and it was getting worse on each four day cycle.

We decided that NIH would be the best choice.  There were really no reasonable choices but we had to pick something.  The first step was for each sibling to have his blood drawn and sent to see if anyone matched Rick  With seven siblings, we were pretty optimistic.