Constant Reader, again, this is a post with little art. It is late on the evening before I travel to New York for my prognosis appointment. In this post I am:
- Capturing my current status—including what I know, what I don't know, and my decisions thus far
- Detailing my protocol
- Enumerating my questions.
Believe me, I have much to say that is not merely factoid. Those posts are coming...
Current Status
Here's what I know so far...
- Late-relapse germ cell tumors are chemotherapy resistant.
- The standard chemotherapy protocol for germ cell tumors is not likely to be effective, which is why my oncologists recommend that I undergo the TIP protocol (detailed below).
- TIP is an aggressive form of chemotherapy. (The drugs administered in this chemotherapy have serious, common side effects and several risky side effects. Vigilance is required throughout my treatment.
- Chemotherapy will be followed by surgery.
- If the chemotherapy was successful the surgery is to remove any portions of the dead tumor(s) that remain.
- If the chemotherapy was not successful, the surgery I will undergo is referred to as "desperation surgery".
That's a real medical term.
Fek.
Here's What I Do Not Know
- What is my staging?
- What is my prognosis (survival percentages)?
Decisions Made So Far
From my previous post:
- To Tip or Not To Tip
I am electing to undergo the TIP protocol - Where Shall I Get Treatment
I choose to have treatment regionally, in proximity to my home in Maryland (as opposed to having it at MSK in NY).
To Tip or Not To Tip?
I've chosen to go with the TIP protocol, based on my research and the counsel of a number of people in whom I have a great deal of trust.
The research shows that my cancer is chemotherapy resistant. It is better for me to hit is full force while I am at my healthiest, rather than risking two rounds of chemotherapy (BEP then TIP), when I will be weakened by the first round. Surgery is part of the process regardless, so that is a non-factor.
The counsel has been unanimous. My treatment is being led by the world's leading experts in this type of cancer. No one is as familiar with the treatment options as this team. I should trust them. They have developed the protocols. They have conducted the research. They know what variables effected the research outcomes, and they know where I fit within the context of patient profiles. If their recommendation is TIP, I should go with TIP.
I have a single point of contact, but I am being monitored by a team of oncologists. No one else has the background to offer a better second opinion. These are the guys. This is my team.
Lets roll.
Where Shall I Get Treatment?
I've chosen to go locally for three reasons:
- The LAs
- My job
- Interim care
I can't spend 12 weeks in New York. I don't have the means. And even if I did, I cannot abide the idea of being away from my girls for the duration. As it is, I know my time with them will be severely curtailed.
If I am to see them at all during this period, I need to be in Maryland. In this sense, it is a non-decision.
I also remain mindful of my job. I have been blessed to be employed at the American Chemical Society for both of my cancer odysseys. The organization—and my management in particular—has supported me professionally and personally. I do not underestimate the importance or value of this. I deeply appreciate it. The very least I can do is to remain responsible as an employee, and do what I can, when I can
Further, I need the work. I need structure, goals, and achievement. I need to be able to measure my progress in some way other than chemotherapy. My job matters, and I need to be able to do it.
Finally, chemotherapy is risky. A lot can go wrong. What is for you a simple case of the sniffles represents a serios threat to my health. In its simplest terms, if I get a fever, I go straight to the hospital. An infection can kill me. Period. Full stop.
Let that sink in for a moment.
Traveling back-and-forth to New York would be logistically challenging—can you imagine a 3.5-hour post-chemotherapy train ride? My return trip after my PET scan was challenging enough. Making that trip after a week of chemo is unfathomable.
And I am getting chemo through the cold and flu season. The chances of exposure are going to be high—just look around you now, stores are already promoting flu shots.
I need to be near the team that will be administering my chemotherapy. I need to have close contact with them for any of the myriad eventualities that may happen. Short of living in New York for the next three months, the best option to ensure that I have close care is for me to get treatment locally.
TIP Protocol
I have a copy of the protocol used during the TIP clinical trials. Some high-level notes:
- I will undergo four cycles of chemotherapy, each cycle lasts 21 days.
- I will degrade as I proceed. Each cycle will take more out of me; my condition will deteriorate.
- Side effects are unpredictable. Everyone reacts to the medications differently. Being fit and healthy does not guarantee a smooth chemotherapy experience.
- Vigilance is the order of the day. The risks are real, and they are mortal.
Medications
Dexamethasone
This steroid is used to reduce the chances of allergic reactions to paclitaxel.
Paclitaxel
Paclitaxel is a mitotic inhibitor derived from the bark of the Pacific yew tree. Paclitaxel stabilizes microtubules and as a result, interferes with the normal breakdown of microtubules during cell division.
Common side effects include nausea and vomiting, loss of appetite, change in taste, thinned or brittle hair, pain in the joints of the arms or legs (lasting two to three days), changes in the color of the nails, and tingling in the hands or toes.
Ifosfamide
Ifosfamide belongs to the group of medicines called alkylating agents. Ifosfamide interferes with the growth of cancer cells, which are eventually destroyed.
The growth of normal body cells may also be affected by ifosfamide. As a result, ifosfamide is often used in conjunction with mesna to avoid internal bleeding in the patient.
Common side effects include: nausea, vomiting, loss of appetite, diarrhea, sores in the mouth and throat, hair loss, general feeling of pain and tiredness.
Serious side effects may include: swelling, redness, and pain in the place where the medication was injected; rash; itching; difficulty breathing or swallowing; shortness of breath; wheezing; irregular heartbeat; chest pain; hoarseness; yellowing of the skin or eyes. Onset of any of these symtoms requires immediate contact with my doctors.
The "Important Warning" section is a little intimidating:
Ifosfamide can cause a severe decrease in the number of blood cells in your bone marrow. This may cause certain symptoms and may increase the risk that you will develop a serious or life-threatening infection or bleeding. If you experience any of the following symptoms, call your doctor immediately: fever, chills, sore throat, ongoing cough and congestion, or other signs of infection; unusual bleeding or bruising; bloody or black, tarry stools; bloody vomit; or vomiting blood or brown material that resembles coffee grounds.
Mesna
Mesna is used to moderate the effects of ifosfamide—specifically the effects on the urinary tract and bladder.
In biomedical terms, it is used therapeutically to reduce the incidence of haemorrhagic cystitis and haematuria when a patient receives ifosfamide or cyclophosphamide for cancer chemotherapy. These two anticancer agents, in vivo, may be converted to urotoxic metabolites, such as acrolein. Mesna assists to detoxify these metabolites by reaction of its sulfhydryl group with the vinyl group. It also increases urinary excretion of cysteine.
Cisplatin
Cisplatin is a platinum-containing anti-cancer drug. It reacts in vivo, binding to and causing crosslinking of DNA, which ultimately triggers apoptosis (programmed cell death).
Common side effects include: kidney damage, nerve damage (particularly to the eyes and ears), nausea and vomiting, electrolyte disturbance, bone-marrow suppression, anemia
Pegylated filgrastim (Neulasta)
Neulasta is the brand name for this white blood cell stimulant. It stimulates the bone marrow to produce more neutrophils to fight infection.
Protocol
- Day 1 Eve:
- Dexamethasone 20 mg by mouth. - Day 1
- Routine blood tests
- Physical examination and vital signs
- Assessment of chemotherapy toleration
- Dexamethasone 20 mg (morning)
- Paclitaxel, ifosfamide, cisplatin (6-7 hours)
- Dexamethasone 20 mg (evening) - Day 2
- Dexamethasone 20 mg (morning)
- Paclitaxel, ifosfamide, cisplatin (6-7 hours) - Day 3
- Ifosfamide, cisplatin (5 hours) - Day 4
- Ifosfamide, cisplatin (5 hours) - Day 5
- Ifosfamide, cisplatin (5 hours) - Day 6, 7, or 8 (24-72 hours post chemotherapy)
- Pegylated filgrastim (Neulasta) - Day 15
- Routine blood tests
- Physical examination and vital signs
- Assessment of chemotherapy toleration - Day 22 of each cycle = Day 1 of cycle (n + 1)
- Day 85+ (End of TIP)
- Routine blood tests
- Physical examination and vital signs
- Assessment of chemotherapy toleration
- CT and /or PET scans
QUESTIONS
General- What is my staging?
- What is my prognosis? Give me numbers.
I read through the studies. I learned that patients in the main study (2005) had a 70+% survival rate after TIP. Unfortunately, all those patients had had chemotherapy as a part of their original cancer treatment (initial cancer, not the relapse).
In the study that looked at TIP for patients who did not have chemotherapy as part of their initial cancer, the survival rate was 50%.
Is there more recent research?
What factors/variables were present in the surviving (or non-surviving)
Where do I fit in the patient profile? - What are the three top things you recommend that I do as a TIP patient?
Pre-Treatment
- Is there anything I should do to prepare myself physically for treatment?
- I have a dentist appointment scheduled for Thursday. Are there any other medical appointments I should make prior to treatment?
- Audiology
- Ophthalmologist
Post-Chemotherapy
- What happens after chemotherapy? What tests are performed and when? By whom?
- Post-chemotherapy surgery appears to be in my future. How long after the end of my fourth course of chemotherapy would I have surgery? What factors play into the timing?
Non-Sloan-Kettering Administration of Chemotherapy
- What are your concerns about my being treated away from MSK?
- What does the communication look like between remote administrators and
What will be will be what will be.
I've got this.
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