You Think You Got Problems?

When we are challenged by change or adversity, we have an opportunity to take our true measure. Do we deal with change by freaking out? Being angry? Do we look for an outlet that is constructive or otherwise?

My friend Jen has Non-Hodgkin's Lymphoma, and when it comes to dealing with adversity, she takes the cake. She's stared this cancer in the face for several years, and is now in the fight of her life, for her life. Jen doesn't freak out, although I'm sure she has her moments. She doesn't vent rage on her friends. She uses a finely honed sense of humor as her greatest weapon, and as Dory said in "Finding Nemo", she keeps on swimming.

I'm so proud of Jen. I just had to share this with you. We have people like Jen to look up to when problems or change take us out of our comfort zone.

The real heros in this play.

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Jen and Her Mom, June 2008

Hi Everyone,

Normally I don't send documents regarding serious things, like the attached Stem Cell Transplant information that I will be enduring. I've been asked by a few of you when I will start the stem cell transplant. At this time, I don't know. It could be next month, two months; not sure. On the 16th, I will have to have another PETscan to see if the tumors have shrunk enough for the stem cell process to begin, plus another spinal tap, bone marrow biopsy, and more tests on my organs to see if I'm a good candidate. According to the blood specialist/oncologist, I'm a good candidate ... yet the preliminaries have to be completed.

If you feel the urge to donate blood - please do. I will be enduring some blood transfusions and will need blood throughout the stem cell process. Please read the attached file if you want to know what my future holds. Yes, it can look bleak, but I'm strong and stubborn.

I'm too much like a New York cockroach; you just can't kill it.

Any and all comments are welcome. Am I scared? Hell yes! But knowing that I have a great support team such as y'all ... I feel like I can beat this. I appreciate all your prayers, positive thoughts, light and love.

Jen

Jen and Her Dad, June 2008

UCSF Medical Center
Adult Leukemia and Bone Marrow Transplant Program
Autologous Stem Cell Transplantation for Non-Hodgkin’s Lymphoma Two-Step Approach Consolidation Chemotherapy with EAR BMT and CBV

Introduction

I have a malignant Lymphoma, which has either failed to go into complete remission with initial therapy or has recurred despite initial treatment with chemotherapy. Even though my disease may be in remission, without further treatment it will return again and become fatal. It is very unlikely that additional “standard” chemotherapy such as I have been receiving will be able to prevent a future recurrence.

In order to give me the best chance of permanent control of my lymphoma, my doctor has recommended treatment with autologous stem cell transplantation. This treatment is more intensive and difficult than “standard” chemotherapy, but can be more effective in eradicating lymphoma. The purpose of receiving this treatment is to try to give me a chance of cure of my disease and long-term survival.

Procedures

I will initially be evaluated to make sure my disease is in reasonable control, and I am in satisfactory condition to proceed with this intensive treatment. This evaluation consists of physical examination, routine blood tests, tests of heart and lung function and bone marrow aspirate and biopsy.

Treatment will consist of two sequential steps, “consolidation” chemotherapy and stem cell collection followed by high dose chemotherapy and stem cell transplantation.

Step 1 – Consolidation Chemotherapy and Stem Cell Collection

First, I will be admitted to the hospital for chemotherapy treatment and will be hospitalized for approximately four weeks. I will have a large IV catheter (“Groshong catheter”) placed in one of the large veins in my neck. This catheter will be used for IV medications and transfusions and for drawing blood samples.

I will receive the chemotherapy drug etoposide intravenously (by vein) continuously for four days. I will also receive the chemotherapy drug Ara-C intravenously for two hours twice daily for the same four days. After completion of chemotherapy I will be supported with antibiotics, blood transfusions, platelet transfusions, and nutritional and general support. I will also receive 2 doses of the anti-lymphoma antibody Rituximab. These will be given IV over 4 hours 1 day and 8 days after completing the chemotherapy.

Starting two weeks after beginning this chemotherapy, I will receive the growth factor, G-CSF daily by subcutaneous (under the skin) injection to help my white blood count recover more quickly and to stimulate the release of “stem cells” from my bone marrow into my circulating blood. When my blood counts have recovered to adequate levels I will undergo several (usually 2-4) “leukopheresis” procedures to collect stem cells out of my circulating blood. Depending on the type of intravenous catheter that I have at that time, an additional catheter may need to be placed for this collection. This catheter is placed in the large blood vessels in the chest. During each of these procedures my blood will be circulated through a machine that separates the blood components by spinning them. My stem cells (together with some white blood cells and platelets) will be collected into a bag and the remainder of the my blood cells will be returned to me. Each collection procedure takes three to four hours. These will be repeated daily for 2 to 4 days until my physicians have determined that enough cells have been collected to restore normal bone marrow function and to allow me to proceed with the second phase of treatment. Small amounts of these collected stem cells (less than 5% of the total) will be saved for research studies.

When my blood counts have recovered to adequate levels and I have recovered from the side effects of chemotherapy and no longer require intravenous antibiotics I will be discharged from the hospital. I will remain out of the hospital for at least four weeks until I recover from the effects of this chemotherapy treatment.

Step II – Autologous Stem Cell Transplantation

After a four to six week rest period at home I will again be evaluated to make sure I am still in remission and to make sure that my internal organs (heart, liver, kidney and lungs) are in satisfactory condition to proceed with further intensive treatment.

I will then be admitted to the hospital to proceed with the second step in the treatment, the autologous stem cell transplant. I will be hospitalized continuously for 3-5 weeks. As with the first hospitalization, a “Groshong” catheter will be placed in one of the large veins in my neck.
I will receive high-dose “CBV” chemotherapy. I will receive BCNU IV over 2 hours on day -6. After a rest day, on day -4, I will receive Etoposide IV over 4 hours. After another rest day, on day -2, I will receive Cyclophosphamide (“Cytoxan”) IV over 1 hour. After another rest day, on day 0, I will receive an intravenous infusion of my stem cells which have been frozen and stored since their collection. The stem cell infusion is given through my IV catheter like a transfusion.
During the remainder of my time in the hospital I will be supported with blood transfusions, platelet transfusions, antibiotics and nutritional support in a manner similar to that during my previous treatment. I will receive daily subcutaneous injections of G-CSF to help my white blood cells recover more quickly starting 6 days after the stem cell counts have recovered and my body has healed from the effects of the high-dose chemotherapy, I will be discharged from the hospital. These will be given until my immune system recovers to a safe level. During the first two years after transplantation I will be monitored periodically. After two years I will only be seen yearly for blood counts unless I have other medical problems which need closer follow-up.

Risks and Discomforts

The primary risk of receiving this treatment program is that the proposed treatment may not be any more effective than other treatments but could be more difficult and hazardous to me. The treatment of lymphoma with high-dose chemotherapy is an inherently risky and uncomfortable undertaking. Some potential complications are serious and permanent disability or even death may occur as a result of this treatment. Overall, the chance of death due to a complication of treatment is 2-5%. However, these sorts of risks would be inherent in any form of aggressive treatment of lymphoma that had a reasonable chance of cure.

Step I – Risks

During the first chemotherapy treatment with etoposide and high-dose Ara-C I may experience nausea and vomiting from these chemotherapy drugs. Anti-nausea medicines will be used to try to minimize this. High-dose chemotherapy has a number of complications. The most serious complication of chemotherapy treatment is lowering of normal blood counts. Lowered red blood counts leads to anemia and this will require correction with transfusion of red blood cells. Lowering of the platelet count leads to a risk of bruising or bleeding and I will require periodic transfusions of platelets to prevent bleeding. If my body rejects platelet transfusions it may be difficult to keep me free of bleeding and bleeding could even be fatal. The most serious consequence of chemotherapy is lowering of the normal white blood count since white blood cells protect the body against infection. Having a low white blood count leads to an increased risk of infection. Although I will be given several antibiotics to attempt to prevent infections, these may still occur and may require additional antibiotics. During periods of a low white blood count infections can become overwhelming and even fatal.

Chemotherapy causes other side effects as well. High doses of Ara-C can cause fever, skin rashes, eye irritation and damage to the liver or lungs. I will be given eye drops to prevent eye irritation. High doses of Ara-C may also cause damage to the brain. This usually consists of a temporary (2-5 days) loss of coordination and temporary difficulty in speech or thinking. However, in rare cases (less than 2%), these changes may be permanent, disabling or even fatal.
Etoposide can cause sores in the mouth or in the intestines which may be painful. These may prevent me from eating, and the discomfort or pain may require treatment with narcotics. Etoposide may also be harmful to the liver. Etoposide may affect nerves, causing numbness or burning sensations in the feet. If these occur, they usually resolve in 1-2 weeks. The white blood cell growth factor G-CSF may cause pain in the bones as it speeds up the regrowth of bone marrow and leads to faster recovery of blood counts. This pain will be controlled with pain medications as necessary.

Rituximab may cause fever and chills during the infusion. I will receive medications to try to minimize these reactions.

Placement of the large intravenous catheter in my central veins for the purpose of collection of blood stem cells may be temporarily uncomfortable or even painful. There is a risk of puncture of the lung which rarely (less than 2%) could require placement of a tube into my chest to re-expand the punctured lung. There is also a risk of bleeding and infection. The actual collection procedure may cause fatigue but is not otherwise uncomfortable or painful.

Step II – Risks

During the administration of CBV chemotherapy, I may experience a number of side effects, but I will receive anti-nausea medications to try to keep me as comfortable as possible. BCNU may cause temporary low blood pressure and I may need extra IV fluid or possibly medications such as dopamine to help maintain and adequate blood pressure. Etoposide can cause nausea, vomiting, headache, fever and chills, and temporary low blood pressure. Cyclophosphamide frequently causes temporary nausea and vomiting despite the use of anti-nausea medication.
During the re-infusion of my blood stem cells I will experience a number of side effects related to the chemical DMSO which is mixed with the stem cells in order to allow it to be safely frozen and thawed. The stem cell infusion takes place over 30-60 minutes. Typical side effects are nausea, vomiting, headache, flushing, chest tightness and pressure and abdominal cramps. I will receive anti-nausea medicines to try to minimize these effects and they should be gone within several hours after the infusion is completed.

Even though the chemotherapy drugs themselves are out of my body by the time of the stem cell re-infusion, most of the serious side effects of chemotherapy do not begin to appear until several days after the stem cell infusion. CBV can cause mouth sores which may be severe. It is possible that I will require continuous infusions of morphine or other narcotics to keep me reasonably comfortable, and it is possible that during at least on week when the mouth sores are most severe that I will not be completely comfortable. The mouth sores may make me unable to eat and it is possible that I will need to be fed intravenously for at least one week. In addition to causing mouth sores and skin rashes, the combination chemotherapy affects the entire intestine. This may lead to long periods of nausea or vomiting, diarrhea or crampy abdominal pain and inability to eat for several weeks. All of these side effects will heal on their own with time.
There is a small chance that the high-dose chemotherapy will injure some of my internal organs. CBV can be damaging to the liver and lungs and severe or even fatal damage may occur. The risk of this small, approximately 1-2%.

In addition to these direct side effects of the chemotherapy drugs, the major side effect of this chemotherapy is lowering of the normal blood counts. As with other chemotherapy, I will require transfusions of blood and platelets and will require a number of antibiotics until my blood counts recover.

There is an additional risk unique to autologous stem cell transplantation and that is that my blood counts may fail to ever return to normal. The doses of chemotherapy I am receiving are expected to cause permanent damage to my bone marrow. Reconstitution of my normal blood counts will depend of the health of the blood stem cells which have been collected from me and which are being infused following chemotherapy. My bone marrow stem cells have already been injured by exposure to chemotherapy. The stem cells are further subjected to a period of freezing and thawing which may cause additional damage. Although my physicians will not proceed with the bone marrow transplant procedure unless they are confident that enough healthy stem cells have been collected to restore my blood counts, there is a small chance (less than 1%) that the cells will not grow back as expected. If my stem cells do not re-grow completely I could become permanently depended on transfusions. If my stem cells fail to grow, I will die of bone marrow failure.

After leaving the hospital there are still some additional risks. It will take my immune system several months to recover to the point that I can protect myself from infections and serious infections could still occur. There is a delayed form of lung injury caused by BCNU chemotherapy which can appear 1-2 months after leaving the hospital. If I develop cough or shortness of breath after leaving the hospital, it is important to get medical attention immediately. This lung injury can be effectively treated with medication, but if treatment is delayed for several days it may not be effective and the lung injury can become fatal.
The most serious risk is that despite intensive treatments my Lymphoma could still recur. The risk of this is approximately 50-60%. Therefore my chance of cure and long-term survival is approximately 40-50%.

There are some long-term side effects of high dose chemotherapy with stem cell transplantation that pose potential risks. It is highly likely that I will be infertile (unable to have children) after this treatment. I will probably need to take sex hormones (estrogen or testosterone) because my own production of them may be inadequate. There is a small risk of developing a second type of cancer because of this treatment.

Jen's Doggies, June 2008

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When I think I have problems, I take a moment to sit and think. For every problem I think I have, there are many, many others out there with bigger problems.

And chances are they're faring better, too.

D~

End Note: The photo at the top, "Glass Sculpture, June 2008" was taken by Jen on June 9, 2008.