What will be happen to JEN? TIL what? Tumor Infiltrating Lymphocytes, huh?
This is a very long, informative post. I tried to be as simplified as I could. It's a very complicated, intricate, dangerous, exciting, promising, scary procedure all at once.
PLEASE LET THIS BE MY CURE:
TIL--HERE I COME?
Yesterday, I called MDA to get more of a handle on what was in the cards for me. Velvet called me back who is in charge of the TIL protocol and was able to give me so much information that I could actually understand so I thought I would share. It is without a doubt amazing and fascinating what they can do and are about to do to me. Part of me realizes that I'm REALLY Lucky to qualify for this, but I would be lying if I didn't report that I wasn't nervous, scared, or apprehensive. No matter how positive of a person I am, I still wish I had a crystal ball in front of me telling me this would be my cure and that it would work.
It has high percentages which are in 50% of the patients, but reality tells me there is still room for disappointment. 50% is great, but in my world....50% still means an F....grin and it still may not work so in a way, it's very much like Russian Roulette. With Cancer, and for me, with Melanoma, all we have is hope. Of course I will fight, of course I won't turn down a cutting the edge treatment, but when it comes down to it, it's my body that is going to be enduring all of this and it's my choice. I have to hit those dark places and face them in order for ME to be ready.
I have to feel those negative emotions without being told to fight. I'm not being pessimistic and for me, I don't need a cheerleader. I'll get there. Trust me, I WILL FIGHT, but it doesn't mean I wish I didn't have to, it doesn't mean that I am not scared. People many times ask me where I get this strength and quite honestly it comes form facing the negative, feeling the DEMONS, and telling them NO. If I never faced those negnative emotions and essentially lay them to rest, the POSITIVE IN ME couldn't prevail. YOU just don't see me being negative, but trust me, I'm doing the work.
I'm not super human, I just LOVE my life....When faced with situations in which really you have no choice, you learn to just FIGHT, and drop off all the meaningless CRAP. I don't have time to focus on the little things. This treatment is a fascinating one....Our LIVES in order to keep order NEED to remain simple. I'm doing this so I can be with you all many years to come. Am I excited really to do this treatment? NO! Am I excited for the potential to be NED (NO EVIDENCE OF DISEASE) for years and years. YOU BET! The emotion I am working through right now, is learning to be OK, after if going through all this doesn't work. That is a 50% reality too. I get my FIGHT from facing the facts and knowing what I am up against before hand. After all that has been dealt with, I go into almost like a positive meditative trance that tells myself ONLY THE POSITIVE IS POSSIBLE.
Here is a picture of what My future with TIL may hold. First of all TIL? What is it? It is Tumor Infiltrating Lymphocytes! I know it still doesn't make sense and when you look it up you get medical jargon. I'll do my best to explain. Before chemo even starts, they will thaw my cells that were removed in July to see if they are viable before they start.
After they removed my tumor in July, what they did was look for the T-cells that were attacking it. They were able to separate those T-cells and grow them as we know they EAT so to speak my melanoma. Cool, right? Then what they have been doing was growing those cells to the billions by injecting them with Interleukin-2 (IL-2). IL-2 is naturally existing in our body, like an interferon. It is part of our immune system which is why it's called an immuno therapy and not a chemo. When we are sick, what makes us feel that way is the interferons and interleukin-2's in our body fighting the illness. Crazy they can even do this.
1st week of being in the hospital:
I will be receiving cytoxin/flubarabine. Those are both Chemo drugs. These are the drugs that will cause me to lose all my hair. I will be shaving my head before hand. That will be an emotional experience for me, but one that will fuel my fight. These two chemos do nothing for the melanoma, but rather given to drop my blood count and more importantly drop my lymphocytes. rrow that we need to get out so we can make room for the good stuff. I will experience fatigue and nausea, but this week will be the better of the 2 weeks in the hospital. Knowing how I have handled nausea in the past when they say you may experience nausea, is I will be puking my brains out.
Expect the worst...I have def. learned that. My blood counts don't actually drop until day 6-7 and that is when I need to be super careful. They said, I may have visitors the first week, but it just depends on me how I'm feeling if I'm up for it. If I'm extremely nauseous, I may not want them. Have to play that by ear as I also could be board and desire them. Just lots of unknowns. It's important for me to keep the moving parts at a min. When my blood counts are down ABSOLTELY NO VISITORS ASIDE FOR JEFF, who will be in suit and mask.
Beginning of 2nd week:
My immune system is at 0 and my bone marrow has essentially nothing in it so there is room for the TIL. TIL day quite boring as I'm essentially just waiting for them and they will be later in afternoon. Velvet said, "It's bunch of peope in room staring at you. grin I prob. will feel nothing as it goes in, but could get chills/fever. The HOPE is the TILS work on all the Melanoma in my system. The TILS entered are the ones that identified the melanoma and eat so to speak.
IL-2 treats melanoma and feeds the lymphocytes
IL-2 is what our bodies make naturally is a heavy shot of immune system
FEEL yucky because it's the immune system working.
Interlaukin, more intense but ends quicker...Intense is an understatement.
Interleukin creates vascular leak system....some of the fluid within blood system leaks into the system. This is why you gain wait on treatment because of the fluid leaking into the body. This is why I am monitored closely and we have to make sure my body can endure the dosing.
1. kidneys don't funciton
2. lower blood pressure
3. lung fluid
4. A blood transfusion may be necessary
This is why I am having all of these test before hand on my lungs and heart to see if they can sustain the treatment. All I am thinking is THANK GOD I have faith in MD Anderson and my doctors.
The most IL-2 I can receive by protocal is 15, but nobody has ever reached 15. No radiation with TIL. Everytime I get a dose, my blood count, and all body organs will be checked to ensure it is safe.
People can get confused on IL-2, so based on my history, I'll expect it and have them watch my thryoid carefully too.
There is a GREY LINE IN TERMS OF SIDE EFFECTS and the effectiveness so the doctors will call it quits.
Whatever I can endure, I will take. ONE PATIENT COULD ONLY USE 1 DOSE......DUE TO SIDE EFFECTS GREATER THAN RISKS
Tissue type A0201
I also just found out that I have tissue type AO201.
I find out thurs. whether or not I will be participating in this arm of the treatment or not. This is experimental, but the thought is people with this tissue type respond well to Dendritic cells being assigned as T-cells and put back in.
It is really crazy how normal this language feels to me. Me and my melanoma world are very close. grin It's fascinating yes, but still can't believe I talk like this or know all this.
One arm of the study with TIL and the other arm is TIL with Dendritic Cells. Dendritic cells are cells that run around the body that haven't been assigned a role yet......I like to describe them kind of LIKE the game of Uno. These cells are like the WILD card. If I get randomized to that arm, they will essentially just add the Dendritic component. TIL I will still get and that is the 50% effectiveness. The Dendritic component is new and it's unknown, but Dr. Hwu wrote it to be randomized and wrote it thinking if we gave the role of the dendritic cell to be a T-cell it's like getting the SUPER TIL. All theory, not proven. It's the only way we find out. I won't know my protocol until thurs.
The dendritic cells are obtained by a process called: Apheresis. Take the blood out, process it, give them a role and put the blood back in. Kind of explained to me like dialysis. Taken out with the size of a garden hose tube. Crazy wicked again. I would receive this 4 hours after the TIL
I'm a busy girl of learning again over here. Please pray for me....This is all exciting and scary at the same time.
I will see Sandy on thurs. if I get TIL with Dendritric cells it will push my schedule back a couple of weeks or so.
Trade/other name(s): Proleukin, aldesleukin, IL-2
Why would this drug be used?
Interleukin-2 (IL-2) or aldesleukin is used to treat skin melanomas and kidney cancer. It is also being studied for use against some leukemias, lymphomas, and other cancers, as well as some other diseases.
How does this drug work?
Interleukins are part of a family of proteins called cytokines. Immune system cells in the body normally make small amounts of interleukins as a way to communicate with each other. Different interleukins make parts of the body's immune system more or less active.
Aldesleukin is a man-made version of interleukin-2 (IL-2). It is a form of immunotherapy – it boosts the body's immune system to help fight cancer. IL-2 causes the body to make more of certain immune system cells, prompts immune system cells to be more effective, and causes the cells to make more of some other cytokines.
Before taking this medicine
Tell your doctor…
If you are allergic to anything, including medicines, dyes, additives, or foods.
If you have any kind of heart disease. In some people this drug may affect the heart's function or rhythm.
If you have any lung disease or breathing problem (asthma, emphysema, chronic bronchitis, etc.) This drug may cause lung problems or make existing lung problems worse.
If you have an autoimmune disease (where the body's immune system attacks the body's own cells, such as rheumatoid arthritis, lupus, scleroderma, psoriasis, Crohn's disease, myasthenia gravis, diabetes, bullous pemphigoid, etc.). This drug stimulates the immune system, which may make these conditions worse.
If you have any other medical conditions such as kidney disease, liver disease (including hepatitis), thyroid problems, bleeding or clotting problems, congestive heart failure, diabetes, gout, or infections. This drug may make some of these conditions worse. You may need closer monitoring of these conditions while being treated, or the drug dose, regimen, or timing may need to be changed.
If you are pregnant, trying to get pregnant, or if there is any chance of pregnancy. It is not known if this drug might cause problems if either the male or female is taking it at the time of conception or during pregnancy. Check with your doctor about what kinds of birth control can be used with this medicine. This drug should be used during pregnancy only if the potential benefit is thought to justify the potential risk to the fetus.
If you are breast-feeding. While no studies have been done, this drug may pass into breast milk and affect the baby. Talk with your doctor about the possible risks of breast-feeding while taking this drug.
If you think you might want to have children in the future. It is not known if this drug can affect fertility. Talk with your doctor about the possible risk with this drug and the options that may preserve your ability to have children.
About any other prescription or over-the-counter medicines you are taking, including vitamins and herbs. In fact, keeping a written list of each of these medicines (including the doses of each and when you take them) with you in case of emergency may help prevent complications if you get sick.
Interactions with other drugs
This drug is not known to interact directly with other drugs. However, it can cause or worsen a number of conditions, and other drugs may increase this effect. It can also affect the liver and kidneys, which can increase levels of other drugs in the body. Any drugs that affects the kidneys, bone marrow, heart, or liver may have worse effects if you are also taking aldesleukin.
Drugs to control blood pressure, like diuretics and beta blockers, may worsen the low blood pressure with aldesleukin.
Any drugs or supplements that interfere with blood clotting can raise the risk of bleeding during treatment with IL-2. These include:
non-steroidal anti-inflammatory drugs (NSAIDs) such as aspirin, ibuprofen (Advil, Motrin), naproxen (Aleve, Naprosyn), and many others
Note that many cold, flu, fever, and headache remedies contain aspirin or ibuprofen. Ask your pharmacist if you aren't sure what's in the medicines you take.
Check with your doctor, nurse, or pharmacist about all of your medicines, herbs, and supplements, and whether alcohol can cause problems with this medicine.
Interactions with foods
No serious interactions with food are known at this time. Check with your doctor, nurse, or pharmacist about whether some foods may be a problem.
Tell all the doctors, dentists, nurses, and pharmacists you visit that you are taking this drug.
How is this drug taken or given?
Aldesleukin is usually given by an infusion into a vein (intravenous, or IV) over 15 minutes, every 8 hours. This is done for about 5 days, followed by about 10 days off, and then repeated. These infusions are given in the hospital.
Because there may be serious side effects with high doses, some doctors use a lower-dose regimen. The low dose is given as a daily injection under the skin (subcutaneous, or SubQ), and it can be given in a doctor's office or at home. This drug is sometimes given in other ways, such as a continuous IV infusion over 1 to 3 days, especially if it is part of a treatment plan that includes chemotherapy.
The dose of aldesleukin will depend on your weight, your general health, the type of cancer being treated, and how well you do with the treatment.
Side effects with aldesleukin can be serious or life-threatening, especially when the drug is given at high doses. People with serious health conditions (especially heart or lung problems) may not do well with this drug. Your doctor will likely run a number of tests to check the function of your heart, lungs, and other organs before starting treatment.
It's common to have low blood pressure during or soon after the infusion. Tell your nurse if you feel dizzy or faint.
Rarely, this drug may cause fluid to leak out of blood vessels and build up in your lungs, a problem called capillary leak syndrome. Your doctor and nurses will be watching you closely for this. Let your doctor know right away if you feel short of breath, dizzy, lightheaded, or faint. Also, let the doctor know if you have a fast heartbeat,less urine, or if you are unable to keep down fluids and food.
You may have nausea and vomiting on the day you receive this drug or in the first few days afterward. Your doctor may give you medicine before your treatment to help prevent nausea and vomiting. You may also get a prescription for an anti-nausea medicine that you can take at home. It is important to have these medicines on hand and to take them as prescribed by your doctor.
This drug may cause sores in the mouth or on the lips, which often occur within the first few weeks after starting treatment. This can cause mouth pain, bleeding, or even trouble eating. Your doctor or nurse can suggest ways to reduce this, such as changing the way you eat or how you brush your teeth. If needed, your doctor can prescribe medicine to help with the pain.
This drug may cause diarrhea. If left unchecked, this could lead to dehydration and chemical imbalances in the body. Your doctor will likely prescribe medicine to help prevent or control this side effect. It is very important that you take this medicine as prescribed. Make sure you get the medicine right away, so that you will have it at home when you need it. Call your doctor if the medicine doesn't control the diarrhea.
This drug may cause drowsiness and may affect activities such as driving and others that require alertness. Wait until you find out how it affects you before driving or operating other dangerous machinery. Alcohol, sedatives, "nerve pills," or sleeping pills may worsen this effect. Tell your doctor if you are very sleepy or lethargic.
This drug can cause allergic reactions in some people when the drug is given. Mild reactions usually consist of fever and chills. More serious reactions happen rarely, but can be dangerous. Symptoms can include feeling lightheaded or dizzy (due to low blood pressure), fever or chills, hives, nausea, itching, headache, coughing, shortness of breath, or swelling of the face, tongue, or throat. Tell your doctor or nurse right away if you notice any of these symptoms during or after being given the drug. Your doctor or nurse will likely give you medicine to try to prevent an infusion reaction.
Your doctor will likely test your blood throughout your treatment, looking for possible effects of the drug on blood counts or on other body organs (described below). Based on the test results, you may be given medicines to help treat any effects. Your doctor may also need to reduce or delay your next dose of this drug, or even stop it altogether. Keep all your appointments for lab tests and doctor visits.
This drug may affect the function of your liver and kidneys. These organs normally help filter the blood and help the body get rid of certain chemicals. This means other drugs you are taking may stay in the body longer. The drug may need to be stopped or the dose reduced if your blood tests show major changes. If you have kidney disease or liver metastasis or other liver problems before starting treatment, the doctor may need to watch you more closely.
This drug may lower your blood platelet count in the weeks after it is given, which can increase your risk of bleeding. Speak with your doctor before taking any drugs or supplements that might affect your body's ability to stop bleeding, such as aspirin or aspirin-containing medicines, warfarin (Coumadin), or vitamin E. Tell your doctor right away if you have unusual bruising, or bleeding such as nosebleeds, bleeding gums when you brush your teeth, or black, tarry stools.
This drug can lower your white blood cell count, especially in the weeks after the drug is given. This can increase your chance of getting an infection. Be sure to let your doctor or nurse know right away if you have any signs of infection, such as fever (100.5° or higher), chills, pain when passing urine, new onset of cough, or bringing up sputum.
Do not get any immunizations (vaccines), either during or after treatment with this drug, without your doctor's OK. Aldesleukin may affect your immune system. This could make vaccinations ineffective, or could even lead to serious infections if you get a live virus vaccine during or soon after treatment. Try to avoid contact with people who have recently received a live virus vaccine, such as the oral polio vaccine or smallpox vaccine.
Be sure that you tell the doctor you are taking this drug before you get any x-ray with contrast dye that contains iodine. These dyes may be more likely to cause reactions if you have had aldesleukin in the past few weeks.
Rarely, people taking this drug have mental changes like irritability, confusion, or depression. Tell your doctor if you notice this.
Men and women should avoid conceiving a baby while taking this medicine.
Possible side effects
The side effects seen with this drug are more likely to happen and are more likely to be severe if the drug is given as part of a higher-dose rather than a lower-dose regimen.
You will probably not have most of the following side effects, but if you have any talk to your doctor or nurse. They can help you understand the side effects and cope with them.
flu-like syndrome (may include fever, chills, tiredness, headache, muscle and joint pain)
low blood pressure*
shortness of breath
flushing of the face
rash or dry, itchy skin
low urine output*
abnormal blood tests which suggest that the drug is affecting the liver or kidneys (Your doctor will discuss the importance of this finding, if any.)
sores in the mouth or on the lips*
loss of appetite
increased heart rate or change in heart rhythm
swelling in the face, hands, or feet
low platelet count with increased risk of bleeding*
low red blood cell count (anemia) with symptoms like tiredness, weakness, shortness of breath
low white blood cell count with increased risk of infection*
psychosis (loss of touch with reality)
damage to bowel, ruptured or bleeding bowel
death from low blood pressure, capillary leak syndrome, heart problems, or other complications
*See "Precautions" section for more detailed information.
There are some other side effects not listed above that can also occur in some patients. Tell your doctor or nurse if you develop these or any other problems.
Yes – first approved in 1992.
Disclaimer: This information does not cover all possible uses, actions, precautions, side effects, or interactions. It is not intended as medical advice, and should not be relied upon as a substitute for talking with your doctor, who is familiar with your medical needs.
Last Medical Review: 02/18/2010 Last Revised: 02/18/2010