› Forums › General Melanoma Community › Update and IL2 guidance
- This topic has 48 replies, 7 voices, and was last updated 13 years, 2 months ago by
JerryfromFauq.
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- October 6, 2011 at 8:31 pm
A couple weeks ago I posted a topic "bump on neck" and I wanted to give an update and look for guidance.
A couple weeks ago I posted a topic "bump on neck" and I wanted to give an update and look for guidance.
The bump is two swollen lymph nodes and the biposy revealed more melanoma. Also, the neck and chest scans revealed that it has spread to the lungs. I am shocked how quickly this has happend. He just had his neck disection in June 2011 and started interferon in July and petscan was clear in July. Surgery has been scheduled to remove the nodes next week. After a two week healing time he will begin IL2. Any info or thoughts about this would be appreciated. Thanks so much!
April
- Replies
-
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- October 6, 2011 at 8:39 pm
April,
I am so sorry to hear this.
My husband just had a neck dissection and parotidectomy on 9/23.
Yikes!
I guess we always need to remain vigilant. We are getting a brain MRI on 10/14 as one of the doctors we are consulting with wants to make sure there is no brain involvement.
All I know of IL-2 is that my boss is alive because of it! He is a renal cancer survivor. For him it was a wonder drug. He is adamant that my husband advocate for it for his treatment.
I know the side effects during treatment require hospitalization.
God be with you and I will keep you in my prayers.
barb
-
- October 6, 2011 at 10:48 pm
What is IL-2?
IL-2 is a type of natural protein, called a cytokine,
produced by the body. It stimulates the white
blood cells known as T-lymphocytes (T-cells) to
grow and divide. T-cells are an important part of
the body’s immune system. Giving IL-2 in high
doses stimulates the patient’s immune system to
better recognize and destroy cancer cells.
High-dose IL-2 is an FDA-approved, inpatient
therapy to treat metastatic melanoma (advanced
skin cancer) and metastatic renal cell carcinoma
(advanced kidney cancer). Metastatic disease
refers to cancers that have spread beyond the
original site to additional tissues and organs.
What are the benefits of IL-2?
High-dose IL-2 has resulted in disease regression
in 15% to 20% of patients with advanced
melanoma and advanced kidney cancer. About
6% to 8% of these patients experience lasting or
complete regression of all disease.
What happens when I arrive at the hospital?
IL-2 is an inpatient therapy. On your first day, you will
check in with Admitting
Once admitted, you will have blood drawn for routine
tests and an electrocardiogram will be conducted. You
will then receive your paperwork and be directed to the
IL-2 Unit.
Upon arrival, the floor clerk will show you to your room
and introduce you to a nurse who will record your vital
signs and conduct a brief medical interview. The nurse
will also provide you with a small pouch to wear around
your neck. This pouch contains a box that is connected
by wires to adhesive patches on your chest. It enables
the dedicated Telemetry Service to monitor your heart
rate and rhythm at all times during your stay.
How is IL-2 given?
Once you are settled into your room, one of the IL-2
Unit doctors will stop by to answer any questions and to
discuss the placement of the Peripherally Inserted
Central Catheter (PICC) line. The PICC line is a small,
flexible tube inserted into a vein in your arm and
threaded upwards towards your heart. The line is used
to administer IL-2.
Two members of the PICC team—a dedicated unit of
nurses trained to place PICC lines—will come to your
room and insert the PICC. Once the PICC Team has
completed placing the line, your physician will be notified
and you will be taken to the third floor of the
hospital for a chest X-ray.
The doctors will review the chest X-ray to ensure that
your PICC line is correctly positioned. Once the PICC
placement is approved, you will begin to receive your
IL-2 therapy.
What are the side effects of IL-2 therapy?
IL-2 therapy can cause a number of side effects
including: low blood pressure, fevers, nausea,
vomiting, diarrhea, infection, chills, swelling and
weight gain, confusion, skin rashes, and changes in
your liver and blood chemistries.
Fortunately, we can prevent and treat these side
effects as they arise. The day before you are
admitted to the hospital, you will begin taking three
medications to help prepare your body and reduce
your chance of developing fevers, chills, and nausea.
During the course of your hospital stay you will
receive antibiotics to prevent you from acquiring
any infections. If you experience low blood pressure,
we will administer fluids or medications to
raise your pressure and make you feel more
comfortable. Medications are also available to
reduce skin rashes and prevent itching.
How many doses of IL-2 will I receive?
In general, you will receive as many doses of IL-2
as you can safely tolerate—up to a maximum of 15
doses over the period of your stay. Doses are given
approximately every 8 hours and each dose takes
around 15 minutes to administer.
A nurse will draw your blood every morning and
the medical staff will evaluate your status throughout
the day. During treatment other medications
and fluids can be given through the PICC line.
You will receive 2 cycles of IL-2 therapy given 3
weeks apart. Each cycle consists of about 5-7 days of
in-hospital treatment. A CT(computed tomography)
scan is taken 4 weeks after the completion of
the first course (2 cycles). If the scan shows a
response to the therapy, your physician may recommend
that you come back for additional courses.
What can I expect after IL-2 therapy?
Most patients are able to complete a cycle of
IL-2 therapy within one week. You are advised
to rest at home for an additional week after
you leave the hospital. A follow-up visit will be
scheduled for two weeks following the
completion of your therapy.
The multidisciplinary team is experienced in
helping patients and their families cope with
the physical and emotional effects of treatment
-
- October 6, 2011 at 10:48 pm
What is IL-2?
IL-2 is a type of natural protein, called a cytokine,
produced by the body. It stimulates the white
blood cells known as T-lymphocytes (T-cells) to
grow and divide. T-cells are an important part of
the body’s immune system. Giving IL-2 in high
doses stimulates the patient’s immune system to
better recognize and destroy cancer cells.
High-dose IL-2 is an FDA-approved, inpatient
therapy to treat metastatic melanoma (advanced
skin cancer) and metastatic renal cell carcinoma
(advanced kidney cancer). Metastatic disease
refers to cancers that have spread beyond the
original site to additional tissues and organs.
What are the benefits of IL-2?
High-dose IL-2 has resulted in disease regression
in 15% to 20% of patients with advanced
melanoma and advanced kidney cancer. About
6% to 8% of these patients experience lasting or
complete regression of all disease.
What happens when I arrive at the hospital?
IL-2 is an inpatient therapy. On your first day, you will
check in with Admitting
Once admitted, you will have blood drawn for routine
tests and an electrocardiogram will be conducted. You
will then receive your paperwork and be directed to the
IL-2 Unit.
Upon arrival, the floor clerk will show you to your room
and introduce you to a nurse who will record your vital
signs and conduct a brief medical interview. The nurse
will also provide you with a small pouch to wear around
your neck. This pouch contains a box that is connected
by wires to adhesive patches on your chest. It enables
the dedicated Telemetry Service to monitor your heart
rate and rhythm at all times during your stay.
How is IL-2 given?
Once you are settled into your room, one of the IL-2
Unit doctors will stop by to answer any questions and to
discuss the placement of the Peripherally Inserted
Central Catheter (PICC) line. The PICC line is a small,
flexible tube inserted into a vein in your arm and
threaded upwards towards your heart. The line is used
to administer IL-2.
Two members of the PICC team—a dedicated unit of
nurses trained to place PICC lines—will come to your
room and insert the PICC. Once the PICC Team has
completed placing the line, your physician will be notified
and you will be taken to the third floor of the
hospital for a chest X-ray.
The doctors will review the chest X-ray to ensure that
your PICC line is correctly positioned. Once the PICC
placement is approved, you will begin to receive your
IL-2 therapy.
What are the side effects of IL-2 therapy?
IL-2 therapy can cause a number of side effects
including: low blood pressure, fevers, nausea,
vomiting, diarrhea, infection, chills, swelling and
weight gain, confusion, skin rashes, and changes in
your liver and blood chemistries.
Fortunately, we can prevent and treat these side
effects as they arise. The day before you are
admitted to the hospital, you will begin taking three
medications to help prepare your body and reduce
your chance of developing fevers, chills, and nausea.
During the course of your hospital stay you will
receive antibiotics to prevent you from acquiring
any infections. If you experience low blood pressure,
we will administer fluids or medications to
raise your pressure and make you feel more
comfortable. Medications are also available to
reduce skin rashes and prevent itching.
How many doses of IL-2 will I receive?
In general, you will receive as many doses of IL-2
as you can safely tolerate—up to a maximum of 15
doses over the period of your stay. Doses are given
approximately every 8 hours and each dose takes
around 15 minutes to administer.
A nurse will draw your blood every morning and
the medical staff will evaluate your status throughout
the day. During treatment other medications
and fluids can be given through the PICC line.
You will receive 2 cycles of IL-2 therapy given 3
weeks apart. Each cycle consists of about 5-7 days of
in-hospital treatment. A CT(computed tomography)
scan is taken 4 weeks after the completion of
the first course (2 cycles). If the scan shows a
response to the therapy, your physician may recommend
that you come back for additional courses.
What can I expect after IL-2 therapy?
Most patients are able to complete a cycle of
IL-2 therapy within one week. You are advised
to rest at home for an additional week after
you leave the hospital. A follow-up visit will be
scheduled for two weeks following the
completion of your therapy.
The multidisciplinary team is experienced in
helping patients and their families cope with
the physical and emotional effects of treatment
-
- October 6, 2011 at 10:48 pm
What is IL-2?
IL-2 is a type of natural protein, called a cytokine,
produced by the body. It stimulates the white
blood cells known as T-lymphocytes (T-cells) to
grow and divide. T-cells are an important part of
the body’s immune system. Giving IL-2 in high
doses stimulates the patient’s immune system to
better recognize and destroy cancer cells.
High-dose IL-2 is an FDA-approved, inpatient
therapy to treat metastatic melanoma (advanced
skin cancer) and metastatic renal cell carcinoma
(advanced kidney cancer). Metastatic disease
refers to cancers that have spread beyond the
original site to additional tissues and organs.
What are the benefits of IL-2?
High-dose IL-2 has resulted in disease regression
in 15% to 20% of patients with advanced
melanoma and advanced kidney cancer. About
6% to 8% of these patients experience lasting or
complete regression of all disease.
What happens when I arrive at the hospital?
IL-2 is an inpatient therapy. On your first day, you will
check in with Admitting
Once admitted, you will have blood drawn for routine
tests and an electrocardiogram will be conducted. You
will then receive your paperwork and be directed to the
IL-2 Unit.
Upon arrival, the floor clerk will show you to your room
and introduce you to a nurse who will record your vital
signs and conduct a brief medical interview. The nurse
will also provide you with a small pouch to wear around
your neck. This pouch contains a box that is connected
by wires to adhesive patches on your chest. It enables
the dedicated Telemetry Service to monitor your heart
rate and rhythm at all times during your stay.
How is IL-2 given?
Once you are settled into your room, one of the IL-2
Unit doctors will stop by to answer any questions and to
discuss the placement of the Peripherally Inserted
Central Catheter (PICC) line. The PICC line is a small,
flexible tube inserted into a vein in your arm and
threaded upwards towards your heart. The line is used
to administer IL-2.
Two members of the PICC team—a dedicated unit of
nurses trained to place PICC lines—will come to your
room and insert the PICC. Once the PICC Team has
completed placing the line, your physician will be notified
and you will be taken to the third floor of the
hospital for a chest X-ray.
The doctors will review the chest X-ray to ensure that
your PICC line is correctly positioned. Once the PICC
placement is approved, you will begin to receive your
IL-2 therapy.
What are the side effects of IL-2 therapy?
IL-2 therapy can cause a number of side effects
including: low blood pressure, fevers, nausea,
vomiting, diarrhea, infection, chills, swelling and
weight gain, confusion, skin rashes, and changes in
your liver and blood chemistries.
Fortunately, we can prevent and treat these side
effects as they arise. The day before you are
admitted to the hospital, you will begin taking three
medications to help prepare your body and reduce
your chance of developing fevers, chills, and nausea.
During the course of your hospital stay you will
receive antibiotics to prevent you from acquiring
any infections. If you experience low blood pressure,
we will administer fluids or medications to
raise your pressure and make you feel more
comfortable. Medications are also available to
reduce skin rashes and prevent itching.
How many doses of IL-2 will I receive?
In general, you will receive as many doses of IL-2
as you can safely tolerate—up to a maximum of 15
doses over the period of your stay. Doses are given
approximately every 8 hours and each dose takes
around 15 minutes to administer.
A nurse will draw your blood every morning and
the medical staff will evaluate your status throughout
the day. During treatment other medications
and fluids can be given through the PICC line.
You will receive 2 cycles of IL-2 therapy given 3
weeks apart. Each cycle consists of about 5-7 days of
in-hospital treatment. A CT(computed tomography)
scan is taken 4 weeks after the completion of
the first course (2 cycles). If the scan shows a
response to the therapy, your physician may recommend
that you come back for additional courses.
What can I expect after IL-2 therapy?
Most patients are able to complete a cycle of
IL-2 therapy within one week. You are advised
to rest at home for an additional week after
you leave the hospital. A follow-up visit will be
scheduled for two weeks following the
completion of your therapy.
The multidisciplinary team is experienced in
helping patients and their families cope with
the physical and emotional effects of treatment
-
- October 6, 2011 at 8:39 pm
April,
I am so sorry to hear this.
My husband just had a neck dissection and parotidectomy on 9/23.
Yikes!
I guess we always need to remain vigilant. We are getting a brain MRI on 10/14 as one of the doctors we are consulting with wants to make sure there is no brain involvement.
All I know of IL-2 is that my boss is alive because of it! He is a renal cancer survivor. For him it was a wonder drug. He is adamant that my husband advocate for it for his treatment.
I know the side effects during treatment require hospitalization.
God be with you and I will keep you in my prayers.
barb
-
- October 6, 2011 at 8:39 pm
April,
I am so sorry to hear this.
My husband just had a neck dissection and parotidectomy on 9/23.
Yikes!
I guess we always need to remain vigilant. We are getting a brain MRI on 10/14 as one of the doctors we are consulting with wants to make sure there is no brain involvement.
All I know of IL-2 is that my boss is alive because of it! He is a renal cancer survivor. For him it was a wonder drug. He is adamant that my husband advocate for it for his treatment.
I know the side effects during treatment require hospitalization.
God be with you and I will keep you in my prayers.
barb
-
- October 6, 2011 at 10:40 pm
WITH IL-2 AND THINGS THAT HELPED ME AND COULD POSSIBLY HELP YOU.
The first thing you want to do before you step foot into your room that you will be doing treatment in is have someone wipe down your entire room with sanitizers, including the T.V. remote, bed rails, door handles, ANYTHING that you could possibly touch. My husband and daughter would go inand do a clean sweep; all too often patients get infections in hospitals.
Things to bring:
- Your own sheets, pillow, and blanket
- Your own P.J.’s and make sure they are baggy (bring some summer ones and some warmer ones as you will be hot-cold-hot-cold)
- Soft toilet paper
- 2 cases of bottled water
- 2 bunches of bananas
- SARNA anti-itch lotion
- A good lip balm
- An Ipod or some music that has a headset- bring relaxing music
- Some sort of protein drink that is sugar free that can be mixed with water
- A tube of hypo allergenic petroleum jelly (for your eyes lids) My eye lids itched really bad and peeled)
- A heating pad
- Slide on slippers
- A package of body wipes, as natural as you can find them without a lot of perfumes etc to irritate your skin
If someone is sleeping over with you every night (which I recommend if possible) go to the craft store and buy 4” foam padding the shape of a sleeping bag, to put under the sleeping bag.
During and after Treatment Have them give you an Adivan an hour before they do the PICC line
As soon as you feel the slightest sensation of cold feet, hands, chilly etc. ask for the warm heated blankets that the hospital should have on hand.
Before the first dose of IL-2 comes, plug in the heating pad and have it under your feet
If the warm blankets don’t stop you from shaking, ask them to give you Morphine before it turns into the rigors. Provided the patient has no reactions
to morphine.
Make sure you drink, drink, drink as much water as you can. This is very important. It will help avoid renal failure. And don’t let them tell you that
the I.V. fluids you are getting are enough. It’s NOT.
They will give you the common things for nausea and or vomiting. If nothing is working tell them to give you Marinol. It works wonders for most people.
Make sure they give you get Lasix water pills before you leave the hospital. You will gain anywhere from 20-30 lbs of fluid, don’t panic it will come off
in just a few short days with the water pills.
Try to eat 2 bananas a day so your potassium levels don’t get depleted.
As soon as your mouth starts feeling sore (its thrush) tell them to give you the mouth spit (forgot the name) its pink and you swish it but if this doesn’t help and your mouth gets really bad tell them to give you Lidocaine Viscous
Usually after a couple days you either wont feel like eating or can’t this is when it’s good to drink the protein shake.
-
- October 6, 2011 at 10:40 pm
WITH IL-2 AND THINGS THAT HELPED ME AND COULD POSSIBLY HELP YOU.
The first thing you want to do before you step foot into your room that you will be doing treatment in is have someone wipe down your entire room with sanitizers, including the T.V. remote, bed rails, door handles, ANYTHING that you could possibly touch. My husband and daughter would go inand do a clean sweep; all too often patients get infections in hospitals.
Things to bring:
- Your own sheets, pillow, and blanket
- Your own P.J.’s and make sure they are baggy (bring some summer ones and some warmer ones as you will be hot-cold-hot-cold)
- Soft toilet paper
- 2 cases of bottled water
- 2 bunches of bananas
- SARNA anti-itch lotion
- A good lip balm
- An Ipod or some music that has a headset- bring relaxing music
- Some sort of protein drink that is sugar free that can be mixed with water
- A tube of hypo allergenic petroleum jelly (for your eyes lids) My eye lids itched really bad and peeled)
- A heating pad
- Slide on slippers
- A package of body wipes, as natural as you can find them without a lot of perfumes etc to irritate your skin
If someone is sleeping over with you every night (which I recommend if possible) go to the craft store and buy 4” foam padding the shape of a sleeping bag, to put under the sleeping bag.
During and after Treatment Have them give you an Adivan an hour before they do the PICC line
As soon as you feel the slightest sensation of cold feet, hands, chilly etc. ask for the warm heated blankets that the hospital should have on hand.
Before the first dose of IL-2 comes, plug in the heating pad and have it under your feet
If the warm blankets don’t stop you from shaking, ask them to give you Morphine before it turns into the rigors. Provided the patient has no reactions
to morphine.
Make sure you drink, drink, drink as much water as you can. This is very important. It will help avoid renal failure. And don’t let them tell you that
the I.V. fluids you are getting are enough. It’s NOT.
They will give you the common things for nausea and or vomiting. If nothing is working tell them to give you Marinol. It works wonders for most people.
Make sure they give you get Lasix water pills before you leave the hospital. You will gain anywhere from 20-30 lbs of fluid, don’t panic it will come off
in just a few short days with the water pills.
Try to eat 2 bananas a day so your potassium levels don’t get depleted.
As soon as your mouth starts feeling sore (its thrush) tell them to give you the mouth spit (forgot the name) its pink and you swish it but if this doesn’t help and your mouth gets really bad tell them to give you Lidocaine Viscous
Usually after a couple days you either wont feel like eating or can’t this is when it’s good to drink the protein shake.
-
- October 6, 2011 at 10:40 pm
WITH IL-2 AND THINGS THAT HELPED ME AND COULD POSSIBLY HELP YOU.
The first thing you want to do before you step foot into your room that you will be doing treatment in is have someone wipe down your entire room with sanitizers, including the T.V. remote, bed rails, door handles, ANYTHING that you could possibly touch. My husband and daughter would go inand do a clean sweep; all too often patients get infections in hospitals.
Things to bring:
- Your own sheets, pillow, and blanket
- Your own P.J.’s and make sure they are baggy (bring some summer ones and some warmer ones as you will be hot-cold-hot-cold)
- Soft toilet paper
- 2 cases of bottled water
- 2 bunches of bananas
- SARNA anti-itch lotion
- A good lip balm
- An Ipod or some music that has a headset- bring relaxing music
- Some sort of protein drink that is sugar free that can be mixed with water
- A tube of hypo allergenic petroleum jelly (for your eyes lids) My eye lids itched really bad and peeled)
- A heating pad
- Slide on slippers
- A package of body wipes, as natural as you can find them without a lot of perfumes etc to irritate your skin
If someone is sleeping over with you every night (which I recommend if possible) go to the craft store and buy 4” foam padding the shape of a sleeping bag, to put under the sleeping bag.
During and after Treatment Have them give you an Adivan an hour before they do the PICC line
As soon as you feel the slightest sensation of cold feet, hands, chilly etc. ask for the warm heated blankets that the hospital should have on hand.
Before the first dose of IL-2 comes, plug in the heating pad and have it under your feet
If the warm blankets don’t stop you from shaking, ask them to give you Morphine before it turns into the rigors. Provided the patient has no reactions
to morphine.
Make sure you drink, drink, drink as much water as you can. This is very important. It will help avoid renal failure. And don’t let them tell you that
the I.V. fluids you are getting are enough. It’s NOT.
They will give you the common things for nausea and or vomiting. If nothing is working tell them to give you Marinol. It works wonders for most people.
Make sure they give you get Lasix water pills before you leave the hospital. You will gain anywhere from 20-30 lbs of fluid, don’t panic it will come off
in just a few short days with the water pills.
Try to eat 2 bananas a day so your potassium levels don’t get depleted.
As soon as your mouth starts feeling sore (its thrush) tell them to give you the mouth spit (forgot the name) its pink and you swish it but if this doesn’t help and your mouth gets really bad tell them to give you Lidocaine Viscous
Usually after a couple days you either wont feel like eating or can’t this is when it’s good to drink the protein shake.
-
- October 7, 2011 at 12:48 am
Hi April,
I'm sorry to hear your husbands melanoma has spread so quickly. I can relate to his overwhelming journey. I was diagnosed in January of this year and had my surgery at the end of February. In April, after enrolling in an ipi trial, they found the cancer was already in my lungs – 15 nodules. I had no idea I could advance to Stage 4 so quickly!
I'm currently scheduled for my final infusion of ipi next week. Ipi seemed like a good idea for me because my cancer was limited to the lungs and was considered "low bulk disease". ipi needs time to work and I had the time as my cancer was growing slowly. IL-2 used before or after ipi is supposed to produce some good results, so your husband is headed in the right direction.
I wish him the very best.
Lisa – Stage 4
-
- October 7, 2011 at 12:48 am
Hi April,
I'm sorry to hear your husbands melanoma has spread so quickly. I can relate to his overwhelming journey. I was diagnosed in January of this year and had my surgery at the end of February. In April, after enrolling in an ipi trial, they found the cancer was already in my lungs – 15 nodules. I had no idea I could advance to Stage 4 so quickly!
I'm currently scheduled for my final infusion of ipi next week. Ipi seemed like a good idea for me because my cancer was limited to the lungs and was considered "low bulk disease". ipi needs time to work and I had the time as my cancer was growing slowly. IL-2 used before or after ipi is supposed to produce some good results, so your husband is headed in the right direction.
I wish him the very best.
Lisa – Stage 4
-
- October 7, 2011 at 12:48 am
Hi April,
I'm sorry to hear your husbands melanoma has spread so quickly. I can relate to his overwhelming journey. I was diagnosed in January of this year and had my surgery at the end of February. In April, after enrolling in an ipi trial, they found the cancer was already in my lungs – 15 nodules. I had no idea I could advance to Stage 4 so quickly!
I'm currently scheduled for my final infusion of ipi next week. Ipi seemed like a good idea for me because my cancer was limited to the lungs and was considered "low bulk disease". ipi needs time to work and I had the time as my cancer was growing slowly. IL-2 used before or after ipi is supposed to produce some good results, so your husband is headed in the right direction.
I wish him the very best.
Lisa – Stage 4
-
- October 7, 2011 at 1:37 am
Thank you for your reply…here is another question I have…
He will receive his IL2 treatments at a cancer center. He will go 4 days per week for 8 hours and then 2 weeks off and repeat for 3 go arounds to start. After reading all the information so far of this board, this eems out of the norm…any thoughts of that?
-
- October 7, 2011 at 1:37 am
Thank you for your reply…here is another question I have…
He will receive his IL2 treatments at a cancer center. He will go 4 days per week for 8 hours and then 2 weeks off and repeat for 3 go arounds to start. After reading all the information so far of this board, this eems out of the norm…any thoughts of that?
-
- October 7, 2011 at 1:37 am
Thank you for your reply…here is another question I have…
He will receive his IL2 treatments at a cancer center. He will go 4 days per week for 8 hours and then 2 weeks off and repeat for 3 go arounds to start. After reading all the information so far of this board, this eems out of the norm…any thoughts of that?
-
- October 7, 2011 at 4:41 am
THAT WOULD BE EXTREMELY OUT OF THE NORMAL PROTOCOLS. I have never heard of high dose HD IL-2 being administered this way. My Oncologist has been administering IL-2 since the mid 1980-'s and is one of the world's best at it. He helped develop the standard protocols for the IL-2 treatment before it was ever FDA approved. I had 6 weeks of IL-2 treatments over 18 months (3 rounds) back in 2007-/2008. I was able to take 49 bags.
I see someone has already provided you with 'Jane from Maine's item list for taking with you. Jane is our IL-2 guru, she has helped so many of us. She just passed her 5 year mark of being NED. DebbieVa is also approachng her 5 yr NED anniversary.
Check this article:
CancerGuide: Classic High Dose Interleukin-2 http://cancerguide.org/rcc_il2hd.html
A dose should be administered every 8 hours around the clock for up to 14 doses, dependiing on ones bloodwork, blood pressure, heart rate, fluid output and the way one is feeling. Different Oncologists do vary the spacing between the 2 weeks of hospitalization in each Rouund of Il-2 treatment. Some only want one week off between each week of administration in each round, some go with 2 weeks off and some with 3 weeks off. I persoally recommend 2 weeks off to allow one to return to essentially normal befor starting and other week. After one week off many people are about 70-80% back to normal (Except for the itch – don't forget the Sarna lotion (Needed after the first week.)
Before starting the il-2 administration they will do a stress test on his heart and check his lungs and bloodwork. If they haven't recently done a brain MRI, that is usually also done.
Different hospitals vary in the use of PICC lines or Bard ports for the administration of the IL-2. I preferred the Bard ports. (Less IV insertions into my veins this way.) Also be careful of the Adavan, it can cause hullicinations or other problems (IL-2 can give one enough hullicinations) . I refused Adavan. (it is often administered to the elderly in hospitals to "knock out" the elderly so that they are not a "problem" (my RN sister hates having to give it.)
If your husband has a mustache, I recommend shaving it before treatment. I started out with mine and due to the nasal discharge which removed the skin on my upper lip, had a mess in the mustche and it was very painful when tryiing to shave it. (I can show you some awful pictures of the scabby mustache!)
IL-2 is doable and is the one treatment currently with the longest term success. The other treatment which may one day approach it is the Yervoy (especially if followed with IL-2 at the right timing.)
Do try to drink steadily, to keep the kidney function up and the urine output adaquate.
Will be glad to talk with eiher of you if you like.
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- October 7, 2011 at 4:41 am
THAT WOULD BE EXTREMELY OUT OF THE NORMAL PROTOCOLS. I have never heard of high dose HD IL-2 being administered this way. My Oncologist has been administering IL-2 since the mid 1980-'s and is one of the world's best at it. He helped develop the standard protocols for the IL-2 treatment before it was ever FDA approved. I had 6 weeks of IL-2 treatments over 18 months (3 rounds) back in 2007-/2008. I was able to take 49 bags.
I see someone has already provided you with 'Jane from Maine's item list for taking with you. Jane is our IL-2 guru, she has helped so many of us. She just passed her 5 year mark of being NED. DebbieVa is also approachng her 5 yr NED anniversary.
Check this article:
CancerGuide: Classic High Dose Interleukin-2 http://cancerguide.org/rcc_il2hd.html
A dose should be administered every 8 hours around the clock for up to 14 doses, dependiing on ones bloodwork, blood pressure, heart rate, fluid output and the way one is feeling. Different Oncologists do vary the spacing between the 2 weeks of hospitalization in each Rouund of Il-2 treatment. Some only want one week off between each week of administration in each round, some go with 2 weeks off and some with 3 weeks off. I persoally recommend 2 weeks off to allow one to return to essentially normal befor starting and other week. After one week off many people are about 70-80% back to normal (Except for the itch – don't forget the Sarna lotion (Needed after the first week.)
Before starting the il-2 administration they will do a stress test on his heart and check his lungs and bloodwork. If they haven't recently done a brain MRI, that is usually also done.
Different hospitals vary in the use of PICC lines or Bard ports for the administration of the IL-2. I preferred the Bard ports. (Less IV insertions into my veins this way.) Also be careful of the Adavan, it can cause hullicinations or other problems (IL-2 can give one enough hullicinations) . I refused Adavan. (it is often administered to the elderly in hospitals to "knock out" the elderly so that they are not a "problem" (my RN sister hates having to give it.)
If your husband has a mustache, I recommend shaving it before treatment. I started out with mine and due to the nasal discharge which removed the skin on my upper lip, had a mess in the mustche and it was very painful when tryiing to shave it. (I can show you some awful pictures of the scabby mustache!)
IL-2 is doable and is the one treatment currently with the longest term success. The other treatment which may one day approach it is the Yervoy (especially if followed with IL-2 at the right timing.)
Do try to drink steadily, to keep the kidney function up and the urine output adaquate.
Will be glad to talk with eiher of you if you like.
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- October 7, 2011 at 4:41 am
THAT WOULD BE EXTREMELY OUT OF THE NORMAL PROTOCOLS. I have never heard of high dose HD IL-2 being administered this way. My Oncologist has been administering IL-2 since the mid 1980-'s and is one of the world's best at it. He helped develop the standard protocols for the IL-2 treatment before it was ever FDA approved. I had 6 weeks of IL-2 treatments over 18 months (3 rounds) back in 2007-/2008. I was able to take 49 bags.
I see someone has already provided you with 'Jane from Maine's item list for taking with you. Jane is our IL-2 guru, she has helped so many of us. She just passed her 5 year mark of being NED. DebbieVa is also approachng her 5 yr NED anniversary.
Check this article:
CancerGuide: Classic High Dose Interleukin-2 http://cancerguide.org/rcc_il2hd.html
A dose should be administered every 8 hours around the clock for up to 14 doses, dependiing on ones bloodwork, blood pressure, heart rate, fluid output and the way one is feeling. Different Oncologists do vary the spacing between the 2 weeks of hospitalization in each Rouund of Il-2 treatment. Some only want one week off between each week of administration in each round, some go with 2 weeks off and some with 3 weeks off. I persoally recommend 2 weeks off to allow one to return to essentially normal befor starting and other week. After one week off many people are about 70-80% back to normal (Except for the itch – don't forget the Sarna lotion (Needed after the first week.)
Before starting the il-2 administration they will do a stress test on his heart and check his lungs and bloodwork. If they haven't recently done a brain MRI, that is usually also done.
Different hospitals vary in the use of PICC lines or Bard ports for the administration of the IL-2. I preferred the Bard ports. (Less IV insertions into my veins this way.) Also be careful of the Adavan, it can cause hullicinations or other problems (IL-2 can give one enough hullicinations) . I refused Adavan. (it is often administered to the elderly in hospitals to "knock out" the elderly so that they are not a "problem" (my RN sister hates having to give it.)
If your husband has a mustache, I recommend shaving it before treatment. I started out with mine and due to the nasal discharge which removed the skin on my upper lip, had a mess in the mustche and it was very painful when tryiing to shave it. (I can show you some awful pictures of the scabby mustache!)
IL-2 is doable and is the one treatment currently with the longest term success. The other treatment which may one day approach it is the Yervoy (especially if followed with IL-2 at the right timing.)
Do try to drink steadily, to keep the kidney function up and the urine output adaquate.
Will be glad to talk with eiher of you if you like.
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- October 7, 2011 at 5:15 am
PS, Ipi is the abbreviated name for Yervoy from before it's approval by the FDA. (also known as anti-CLA-4 and Ipilimumab.)
I do not know what drugs someone was talking about starting the day before going in the hospital. I never started any before admittance. My hospital has a great setup for a person to spend the nights with one. They have a large Window seat that is great to sleep on and they gladly provide blankets for the visitor. I do recommend that someone be with the patient most of the time. Tell him I said to not be the "tough guy" and try to wait too long when he starts to feel a chill (start of the rigors) or nausea. If he's a computer guy, he can take a notebook computer with him and that helped keep me occupied. (Wi-Fi is great in the hospitals!)
Janes notes:
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- October 7, 2011 at 5:15 am
PS, Ipi is the abbreviated name for Yervoy from before it's approval by the FDA. (also known as anti-CLA-4 and Ipilimumab.)
I do not know what drugs someone was talking about starting the day before going in the hospital. I never started any before admittance. My hospital has a great setup for a person to spend the nights with one. They have a large Window seat that is great to sleep on and they gladly provide blankets for the visitor. I do recommend that someone be with the patient most of the time. Tell him I said to not be the "tough guy" and try to wait too long when he starts to feel a chill (start of the rigors) or nausea. If he's a computer guy, he can take a notebook computer with him and that helped keep me occupied. (Wi-Fi is great in the hospitals!)
Janes notes:
-
- October 7, 2011 at 5:15 am
PS, Ipi is the abbreviated name for Yervoy from before it's approval by the FDA. (also known as anti-CLA-4 and Ipilimumab.)
I do not know what drugs someone was talking about starting the day before going in the hospital. I never started any before admittance. My hospital has a great setup for a person to spend the nights with one. They have a large Window seat that is great to sleep on and they gladly provide blankets for the visitor. I do recommend that someone be with the patient most of the time. Tell him I said to not be the "tough guy" and try to wait too long when he starts to feel a chill (start of the rigors) or nausea. If he's a computer guy, he can take a notebook computer with him and that helped keep me occupied. (Wi-Fi is great in the hospitals!)
Janes notes:
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- October 7, 2011 at 1:51 pm
Hi April,
I personally would never want to do IL-2 on an outpatient basis. I am one week out from my second stay at Yale/New Haven for IL-2.
Those nurses are in there every 2 hours round the clock to do vitals. The minute something's "off" (potasium levels, low blood pressure, etc.) they give you something in your line to fix it. Not to mention the wonderful afore mentioned side effects-which can include explosive diahhrea which just appears without a moment's notice. they medicated me immediately for that!
Hope this helps!
karen
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- October 8, 2011 at 3:29 pm
April,
What they're proposing raises a lot of questions. Do you know if the IL-2 regimen being talked about is what is referred to as "high dose IL-2"? Or is it some other kind of regimen, e.g., as one ingredeint in a biochemotherapy regimen, or not 'high-dose'?
For high-dose IL2 I was in the ICU for each cycle. I got one bag every 8 hours, and was monitored 24×7. My doctors were very experienced at this regimen having been part of it almost since the beginning as well.
I don't know how you could get (if it's the standard protocol) one bag every 8 hours in an outpatient setting. Which makes it sounds like it may not be the standard protocol just on the basis of not being 1 bag every 8 hours.
Also, "Standard high dose is either 600,000 International Units per Kilogram of Body Weight per dose (written 600,000 IU/Kg/Dose) or 720,000 IU/Kg/Dose. Some intermediate dose IL-2 programs follow the same schedule as for high dose IL-2 but use a lower dose. To be sure you are getting true high dose, be sure you are getting one of these dose levels." — http://cancerguide.org/rcc_il2hd.html
My doctors made it sound like one of the keys to efficacy of high-dose IL-2 treatment was pushing the patient's body as hard as was medically safe to do. That's why we were in the ICU. And they did push pretty hard. So, per other responses, if it's the true "high-dose" IL-2 regiment, it's hard to believe it would be done in an outpatient setting.
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- October 8, 2011 at 3:29 pm
April,
What they're proposing raises a lot of questions. Do you know if the IL-2 regimen being talked about is what is referred to as "high dose IL-2"? Or is it some other kind of regimen, e.g., as one ingredeint in a biochemotherapy regimen, or not 'high-dose'?
For high-dose IL2 I was in the ICU for each cycle. I got one bag every 8 hours, and was monitored 24×7. My doctors were very experienced at this regimen having been part of it almost since the beginning as well.
I don't know how you could get (if it's the standard protocol) one bag every 8 hours in an outpatient setting. Which makes it sounds like it may not be the standard protocol just on the basis of not being 1 bag every 8 hours.
Also, "Standard high dose is either 600,000 International Units per Kilogram of Body Weight per dose (written 600,000 IU/Kg/Dose) or 720,000 IU/Kg/Dose. Some intermediate dose IL-2 programs follow the same schedule as for high dose IL-2 but use a lower dose. To be sure you are getting true high dose, be sure you are getting one of these dose levels." — http://cancerguide.org/rcc_il2hd.html
My doctors made it sound like one of the keys to efficacy of high-dose IL-2 treatment was pushing the patient's body as hard as was medically safe to do. That's why we were in the ICU. And they did push pretty hard. So, per other responses, if it's the true "high-dose" IL-2 regiment, it's hard to believe it would be done in an outpatient setting.
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- October 8, 2011 at 3:29 pm
April,
What they're proposing raises a lot of questions. Do you know if the IL-2 regimen being talked about is what is referred to as "high dose IL-2"? Or is it some other kind of regimen, e.g., as one ingredeint in a biochemotherapy regimen, or not 'high-dose'?
For high-dose IL2 I was in the ICU for each cycle. I got one bag every 8 hours, and was monitored 24×7. My doctors were very experienced at this regimen having been part of it almost since the beginning as well.
I don't know how you could get (if it's the standard protocol) one bag every 8 hours in an outpatient setting. Which makes it sounds like it may not be the standard protocol just on the basis of not being 1 bag every 8 hours.
Also, "Standard high dose is either 600,000 International Units per Kilogram of Body Weight per dose (written 600,000 IU/Kg/Dose) or 720,000 IU/Kg/Dose. Some intermediate dose IL-2 programs follow the same schedule as for high dose IL-2 but use a lower dose. To be sure you are getting true high dose, be sure you are getting one of these dose levels." — http://cancerguide.org/rcc_il2hd.html
My doctors made it sound like one of the keys to efficacy of high-dose IL-2 treatment was pushing the patient's body as hard as was medically safe to do. That's why we were in the ICU. And they did push pretty hard. So, per other responses, if it's the true "high-dose" IL-2 regiment, it's hard to believe it would be done in an outpatient setting.
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- October 8, 2011 at 7:46 pm
I agree about the high Dose IL-2. I believe that it is the reason I am still here. I disagree with many of the Oncologists that refuse to prescribe it and tell their patients that it is too dangerous except as the last resort. It needs to be administered in either an ICU or a specialized setting with one under constant supervision. As I have often noted, my Onc has been administering IL-2 for over 25 years and he is still involved in every bag administered and personally reviews all blood work, pressure readings, urine output, and ones personal feelings. Yes, it is likely to be a rough treatment, but under proper administration and observation it can be the best treatment for some. A low dose regimen is not as apt to get results as fast as the high dose and if one is receiving the full high dose, they should be constantly monitored with drugs readily available to counter act side effects.
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- October 8, 2011 at 7:46 pm
I agree about the high Dose IL-2. I believe that it is the reason I am still here. I disagree with many of the Oncologists that refuse to prescribe it and tell their patients that it is too dangerous except as the last resort. It needs to be administered in either an ICU or a specialized setting with one under constant supervision. As I have often noted, my Onc has been administering IL-2 for over 25 years and he is still involved in every bag administered and personally reviews all blood work, pressure readings, urine output, and ones personal feelings. Yes, it is likely to be a rough treatment, but under proper administration and observation it can be the best treatment for some. A low dose regimen is not as apt to get results as fast as the high dose and if one is receiving the full high dose, they should be constantly monitored with drugs readily available to counter act side effects.
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- October 8, 2011 at 7:46 pm
I agree about the high Dose IL-2. I believe that it is the reason I am still here. I disagree with many of the Oncologists that refuse to prescribe it and tell their patients that it is too dangerous except as the last resort. It needs to be administered in either an ICU or a specialized setting with one under constant supervision. As I have often noted, my Onc has been administering IL-2 for over 25 years and he is still involved in every bag administered and personally reviews all blood work, pressure readings, urine output, and ones personal feelings. Yes, it is likely to be a rough treatment, but under proper administration and observation it can be the best treatment for some. A low dose regimen is not as apt to get results as fast as the high dose and if one is receiving the full high dose, they should be constantly monitored with drugs readily available to counter act side effects.
-
- October 7, 2011 at 1:51 pm
Hi April,
I personally would never want to do IL-2 on an outpatient basis. I am one week out from my second stay at Yale/New Haven for IL-2.
Those nurses are in there every 2 hours round the clock to do vitals. The minute something's "off" (potasium levels, low blood pressure, etc.) they give you something in your line to fix it. Not to mention the wonderful afore mentioned side effects-which can include explosive diahhrea which just appears without a moment's notice. they medicated me immediately for that!
Hope this helps!
karen
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- October 7, 2011 at 1:51 pm
Hi April,
I personally would never want to do IL-2 on an outpatient basis. I am one week out from my second stay at Yale/New Haven for IL-2.
Those nurses are in there every 2 hours round the clock to do vitals. The minute something's "off" (potasium levels, low blood pressure, etc.) they give you something in your line to fix it. Not to mention the wonderful afore mentioned side effects-which can include explosive diahhrea which just appears without a moment's notice. they medicated me immediately for that!
Hope this helps!
karen
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