Friends of Geraldine

The following is from a letter written by Geraldine’s father, Andrew, just before we started the website.

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Geraldine and her daughter Viviane

Last September, Geraldine was diagnosed with Type 2B Hodgkin’s disease, a cancer of the lymph system. The Type 2 means that it had not spread to other organs and was confined to the Lymph system. At that time, there was some question about a nodule in the lungs which showed up on the PET scan. This was eventually considered to be in the lymph node in the lung; if it was in the lung tissue it would have made the diagnosis a Type 4 (the highest rating). The standard treatment for Hodgkin’s disease is chemotherapy (chemo for short) using a cocktail of four drugs known by their initials, ABVD. The success rate of this treatment for Type 2 Hodgkin’s disease is 86%, defined as surviving more than 5 years. Geraldine had been in pain for months prior to treatment, and initially the ABVD treatment reduced the pain significantly. This was interpreted as an indication that the treatment was working. A second PET scan in December confirmed that things were better, but the two main areas of disease were still present. Geraldine had the chemo every two weeks; it took about four hours for the process. She would be totally exhausted for two to three days, but was then able to go to work. This was important psychologically as it kept Geraldine in the real world. Viviane had a similar positive effect on her.

In February, Geraldine started to have pain again in the same place as before. A further PET scan at the end of the treatment cycle (12 sessions) showed that the primary tumor was active again, but showed nothing else active. Geraldine’s oncologist, Dr. McGaughey, proposed that Geraldine have an autologous stem cell transplant – autologous means that the stem cells are her own, not a donor’s. The process is as follows: Geraldine would undergo 3 three-day sessions of high-dose chemo (the initials of this cocktail are ICE) to bring the tumor into remission. They would then stimulate Geraldine’s bone marrow to produce stem cells which float into the bloodstream. They would then be harvested by pumping out the blood, filtering it, and re-injecting the blood. They then give her extremely high dose chemo (BEAM) which kills off all of her bone marrow, all of her white cells, her ovaries (instant menopause) and leaves her extremely sensitive to any kind of infection.

Geraldine and Vivi

The harvested stem cells are then re-injected into the body where they migrate to the bone marrow and eventually grow back. This procedure is carried out as an inpatient in a special part of the hospital. Geraldine would be in a sterile room for about three weeks and then would have to remain near the hospital for about another three weeks. Full recovery would be an additional three months. We visited Dr. Chung at VCU in Richmond to evaluate his program (Geraldine’s insurance does not cover this treatment in Norfolk), and we were shocked at the high level of risk involved. In addition, the chemo had had an cumulative effect on her and she was exhausted. I was concerned that she had neither the physical nor mental force to survive such a treatment.

Given the invasiveness of the procedure, we sought a second opinion and went to UVA to see Dr. Williams – a really well-known specialist in the field. He recommended that we try targeted radiation next, and Dr. McGaughey agreed. Geraldine therefore started a course of 20 radiation treatments aimed at her upper chest and neck. Geraldine supported the radiation well and started to put on some weight and to get stronger.

She also started to get stronger mentally (this is more important for cancer patients than physical strength).

Unfortunately, after an initial reduction of the pain levels, the same old pain came back. Dr. McGaughey did not want to make a definitive diagnosis without another PET scan, so we had to wait six weeks for the radiation-induced inflammation to die down to avoid a false positive result. During this waiting period, Geraldine was experiencing more and more pain, so we were not surprised when the PET scan came back positive. However, the small secondary area in the lung is now also active. Again, Dr. McGaughey proposed an autologous stem cell transplant.

We went last week to visit Dr. Shea, head of the transplant unit at UNC, Chapel Hill. He disagreed with the proposed treatment and recommended an allogeneic stem cell transplant – allogeneic means that the stem cells come from a donor. He told us that he expected that the cure rate (survival for five years) for an autologous transplant was only 15-20%.

He believed that the cure rate for an allogeneic stem cell transplant would be about twice that: 30-40%. We asked him to start the process for finding a matching donor because this can take up to three months, believing that we can make a final decision later. The difference with the autologous stem cell transplant are as follows. The initial cocktail is the same, but because of the increased risk, Geraldine would be in the sterile room for four weeks after the transplant, followed by the obligation to remain near the hospital until 100 days after the transplant. Full recovery would be about six months. During the first 100 days, they expect that there will be several occasions of a crisis requiring rapid treatment or hospitalization. A caregiver(s) must be identified and agree to rest with the patient for this time. Listening to Dr. Shea explain the horrible side effects of the treatment and the low probability of success was one of the worst experiences of my life – I can only imagine how much harder it must have been for Geraldine.

Geraldine and her daughter Viviane - Easter 2008

Dr. McGaughey was initially against this treatment, citing the increased risk of rejection. Fatal side effects occur in autologous stem cell transplants in about 5% of cases (usually within the first three weeks – that is why the hospital insists on the patient remaining in the area following the transplant). However, for an allogeneic stem cell transplant, the initial fatality rate is about 20% (usually within the first 100 days). Dr. McGaughey contacted his alma mater, Duke, and was surprised that the Duke experts also believe that an allogenic transplant gives Geraldine the best chance of survival.

We will be going to UVA to see Dr. Williams tomorrow for his opinion.

We know that he has recommended to Dr. McGaughey that he take a needle biopsy of the small tumor in the lung to make sure that we are still dealing with Hodgkin’s disease and that it has not mutated into something else. He also suggested a different chemo cocktail (GIN).

At this moment, we assume that Geraldine will start chemo on August 4, although we do not know which cocktail (ICE or GIN). We assume that Geraldine will have a transplant, but do not know which. If the needle biopsy indicates that Geraldine’s cancer would not respond well to a stem cell transplant, we would cancel everything, including the ICE or GIN. We know that a stem cell transplant would take place at either VCU in Richmond or UNC in Chapel Hill. At this moment, our preference is for Richmond as it is closer. This would facilitate visits from friends and make our task as caregivers significantly easier.

What are Geraldine’s chances? At this time, it would seem that out of five patients like her, one will die within the first 100 days of an allogeneic stem cell transplant, two more will die in the following five years and two will be cured. If she cannot have the transplant, they would move to a regime of reduced chemo and perhaps radiation aimed at prolonging her life as long as possible and trying to give her a decent quality of life. They have not told us how long she might survive like this.

Geraldine and Vivi

This has been an extremely difficult time for us. Martine has been looking after Geraldine, on occasion almost like a baby because she was so weak. I have filed for FMLA and have had a lot of time off in order to help Geraldine by going to doctor visits and treatment. I have canceled most of my travel (trips to Tennessee, New Mexico, California, India and Brazil) to support Martine. Our expectation is that the coming months will be even harder on Geraldine and on us. However, we are committed to do everything we can to help Geraldine beat the cancer. I only hope it will be enough.

Andrew