› Forums › General Melanoma Community › IL2 on Monday
- This topic has 60 replies, 7 voices, and was last updated 13 years, 2 months ago by
s Mom.
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- February 11, 2012 at 2:22 am
Jeff will start IL2 on Monday. Thank you to all who responded to my previous post. Each reply lifted my spirits and renewed my hope that Jeff will be a lucky responder!! There is so much support and knowledge on this board – just amazing!
I am interested in the anti-PD1 drugs out there – what is the difference between the MDX 1106 and the MDX 1105? Molecule size?? Anybody know?
Jeff will start IL2 on Monday. Thank you to all who responded to my previous post. Each reply lifted my spirits and renewed my hope that Jeff will be a lucky responder!! There is so much support and knowledge on this board – just amazing!
I am interested in the anti-PD1 drugs out there – what is the difference between the MDX 1106 and the MDX 1105? Molecule size?? Anybody know?
I also watched Dr. Weber's webinar on TIL…anyone done TIL? Very interesting and also the combination of Yervoy and anti-Pd1 might be a viable option as a clinical trial. This is a Phase 1 trial with escalating dosages. Anyone know what the usual dosage of anti-PD1?
Any info would be greatly appreciated – thanks again,
Jeff's Mom
- Replies
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- February 11, 2012 at 3:43 am
I have never seen anybody here get better from TIL therapy, as interesting as the science is, it really doesn't seem to work.
I really haven't kept up with the rest.
Good luck to Jeff, I really hope IL2 works. If you don't see any significant shrinkage after the first 2 hospitalizations, it is unlikely to work. Have a backup plan, and go with it.
God Bless
John
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- February 11, 2012 at 3:43 am
I have never seen anybody here get better from TIL therapy, as interesting as the science is, it really doesn't seem to work.
I really haven't kept up with the rest.
Good luck to Jeff, I really hope IL2 works. If you don't see any significant shrinkage after the first 2 hospitalizations, it is unlikely to work. Have a backup plan, and go with it.
God Bless
John
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- February 11, 2012 at 3:43 am
I have never seen anybody here get better from TIL therapy, as interesting as the science is, it really doesn't seem to work.
I really haven't kept up with the rest.
Good luck to Jeff, I really hope IL2 works. If you don't see any significant shrinkage after the first 2 hospitalizations, it is unlikely to work. Have a backup plan, and go with it.
God Bless
John
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- February 11, 2012 at 4:23 am
Hello
I am so sorry to hear about your son's recent diagnosis. From your bio, I believe that you are doing all the right things. The important thing is to stay positive and to go after the disease agressively while keeping your treatment options open. I am going through a very similar ordeal. My oroginal site was on my scalp. Then 3 years later as I was going to work I started vomiting and had horrible headaches. Went to get a scan and found that I had 3 brain tumors. As a father of 3 young children it hasn't been easy. I am sorry, but I can't answer your questions about anri-Pd 1. It looks like a promising treatment though. By the way, I did my treatment at Mayo and my docs were Eric Moore and Dr. Markovic. Great guys. Best of luck to you and your family.
David
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- February 11, 2012 at 4:23 am
Hello
I am so sorry to hear about your son's recent diagnosis. From your bio, I believe that you are doing all the right things. The important thing is to stay positive and to go after the disease agressively while keeping your treatment options open. I am going through a very similar ordeal. My oroginal site was on my scalp. Then 3 years later as I was going to work I started vomiting and had horrible headaches. Went to get a scan and found that I had 3 brain tumors. As a father of 3 young children it hasn't been easy. I am sorry, but I can't answer your questions about anri-Pd 1. It looks like a promising treatment though. By the way, I did my treatment at Mayo and my docs were Eric Moore and Dr. Markovic. Great guys. Best of luck to you and your family.
David
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- February 13, 2012 at 3:23 am
I read your profile and I am so sorry to hear about your diagnosis. You have a beautiful family – just as Jeff does. His also began in the scalp, but he was misdiagnosed – 1st pathology came back benign. The board certified derma-pathologist who read his slide missed it. 5 years later Jeff is Stage 4.
He also had Dr. Moore for his second operation last March. What a great surgeon!! We thought Jeff would have paralysis due to the facial nerve's position in the lower parotid lobe. He had a lopsided smile for about 1 week – no paralysis 🙂
You are in my prayers – we are so hopeful that a cure will soon be discovered for this cancer. I love your quote, by the way. It's really beautiful.
Jeff's Mom
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- February 13, 2012 at 3:23 am
I read your profile and I am so sorry to hear about your diagnosis. You have a beautiful family – just as Jeff does. His also began in the scalp, but he was misdiagnosed – 1st pathology came back benign. The board certified derma-pathologist who read his slide missed it. 5 years later Jeff is Stage 4.
He also had Dr. Moore for his second operation last March. What a great surgeon!! We thought Jeff would have paralysis due to the facial nerve's position in the lower parotid lobe. He had a lopsided smile for about 1 week – no paralysis 🙂
You are in my prayers – we are so hopeful that a cure will soon be discovered for this cancer. I love your quote, by the way. It's really beautiful.
Jeff's Mom
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- February 13, 2012 at 3:23 am
I read your profile and I am so sorry to hear about your diagnosis. You have a beautiful family – just as Jeff does. His also began in the scalp, but he was misdiagnosed – 1st pathology came back benign. The board certified derma-pathologist who read his slide missed it. 5 years later Jeff is Stage 4.
He also had Dr. Moore for his second operation last March. What a great surgeon!! We thought Jeff would have paralysis due to the facial nerve's position in the lower parotid lobe. He had a lopsided smile for about 1 week – no paralysis 🙂
You are in my prayers – we are so hopeful that a cure will soon be discovered for this cancer. I love your quote, by the way. It's really beautiful.
Jeff's Mom
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- February 11, 2012 at 4:23 am
Hello
I am so sorry to hear about your son's recent diagnosis. From your bio, I believe that you are doing all the right things. The important thing is to stay positive and to go after the disease agressively while keeping your treatment options open. I am going through a very similar ordeal. My oroginal site was on my scalp. Then 3 years later as I was going to work I started vomiting and had horrible headaches. Went to get a scan and found that I had 3 brain tumors. As a father of 3 young children it hasn't been easy. I am sorry, but I can't answer your questions about anri-Pd 1. It looks like a promising treatment though. By the way, I did my treatment at Mayo and my docs were Eric Moore and Dr. Markovic. Great guys. Best of luck to you and your family.
David
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- February 11, 2012 at 3:08 pm
Good luck with Monday's treatment. Some people have done remarkably well with IL2…I pray Jeff is one of them! Make sure you get Jane's Tip Sheet for things to bring, etc.
One thing you really have to keep in mind when selecting treatments is…will this treatment preclude me from future treatments? You should definitely ask your doctor that whenever he brings up different treatments.
Tricia
3C
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- February 11, 2012 at 3:08 pm
Good luck with Monday's treatment. Some people have done remarkably well with IL2…I pray Jeff is one of them! Make sure you get Jane's Tip Sheet for things to bring, etc.
One thing you really have to keep in mind when selecting treatments is…will this treatment preclude me from future treatments? You should definitely ask your doctor that whenever he brings up different treatments.
Tricia
3C
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- February 11, 2012 at 3:08 pm
Good luck with Monday's treatment. Some people have done remarkably well with IL2…I pray Jeff is one of them! Make sure you get Jane's Tip Sheet for things to bring, etc.
One thing you really have to keep in mind when selecting treatments is…will this treatment preclude me from future treatments? You should definitely ask your doctor that whenever he brings up different treatments.
Tricia
3C
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- February 11, 2012 at 6:21 pm
I had my HD IL2 treatment at Lutheran General. Where is Jeff going, is it here in Chicagoland? I am praying for him. It's a tough treatment but the nice part is you have a good idea quite soon if there is any response or not. In my case, my LDH went from 3800 my first week to the 600's within 3 weeks and after all treatment slowing declined to 165 as of today (8mos. out).
I hear there is an ANTI PD-1 trial at Northwestern….closed at the moment for evaluation (I think). If there is no response to the IL2 maybe he will have that option? I believe that it is shown Yervoy after IL2 is a good combination also. So wonderful to have so many options now….
Karin
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- February 11, 2012 at 6:21 pm
I had my HD IL2 treatment at Lutheran General. Where is Jeff going, is it here in Chicagoland? I am praying for him. It's a tough treatment but the nice part is you have a good idea quite soon if there is any response or not. In my case, my LDH went from 3800 my first week to the 600's within 3 weeks and after all treatment slowing declined to 165 as of today (8mos. out).
I hear there is an ANTI PD-1 trial at Northwestern….closed at the moment for evaluation (I think). If there is no response to the IL2 maybe he will have that option? I believe that it is shown Yervoy after IL2 is a good combination also. So wonderful to have so many options now….
Karin
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- February 13, 2012 at 3:38 am
Hi Karin,
Thank you for your prayers – he has so many praying for him. It's good to know that this treatment worked for you:)
Jeff's having his treatment at Rush with Dr. Kaufman (who we absolutely love). It's also good to know that the LDH will be an indicator of success.
I understand the anti-PD1 at Northwestern is Curetech under Dr. Kunzel, and it is closed (read about it on another board).
Jeff's Mom
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- February 13, 2012 at 3:38 am
Hi Karin,
Thank you for your prayers – he has so many praying for him. It's good to know that this treatment worked for you:)
Jeff's having his treatment at Rush with Dr. Kaufman (who we absolutely love). It's also good to know that the LDH will be an indicator of success.
I understand the anti-PD1 at Northwestern is Curetech under Dr. Kunzel, and it is closed (read about it on another board).
Jeff's Mom
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- February 13, 2012 at 3:38 am
Hi Karin,
Thank you for your prayers – he has so many praying for him. It's good to know that this treatment worked for you:)
Jeff's having his treatment at Rush with Dr. Kaufman (who we absolutely love). It's also good to know that the LDH will be an indicator of success.
I understand the anti-PD1 at Northwestern is Curetech under Dr. Kunzel, and it is closed (read about it on another board).
Jeff's Mom
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- February 11, 2012 at 6:21 pm
I had my HD IL2 treatment at Lutheran General. Where is Jeff going, is it here in Chicagoland? I am praying for him. It's a tough treatment but the nice part is you have a good idea quite soon if there is any response or not. In my case, my LDH went from 3800 my first week to the 600's within 3 weeks and after all treatment slowing declined to 165 as of today (8mos. out).
I hear there is an ANTI PD-1 trial at Northwestern….closed at the moment for evaluation (I think). If there is no response to the IL2 maybe he will have that option? I believe that it is shown Yervoy after IL2 is a good combination also. So wonderful to have so many options now….
Karin
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- February 12, 2012 at 5:05 pm
Jeffs Mom
MDX–1106 is designed to target PD-1, a receptor expressed on the surface of T-cells and MDX–1105 (Anti-PD-L1 Antibody) targets the PDL1 receptor on Cancer cells and APCs.
Here is a paper that may help you understand.
The B7 Family and Cancer Therapy: Costimulation and Coinhibition
https://www.box.net/shared/x4lp733yfz
Best regards,
Jimmy B
MDX–1106 is designed to target PD-1, a receptor expressed on the surface of T-cells and MDX–1105 (Anti-PD-L1 Antibody) targets the PDL1 receptor on Cancer
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- February 14, 2012 at 2:17 am
Hi Jeff's mom,
I just wanted to let you know my brother(37) just got home yesterday after having spend the week in the hospital for IL2. He ended up getting 10 bags. His blood pressure kept dropping after the 3rd day, so it really slowed everything down. He had all the normal side effects, chills, fever, rigors, weight gain(20 lbs, none til the 3rd day, then he gained 10lbs in one day), he didn't eat much, and wasnt able to sleep due to all the people coming in an out of the room.
Some advice I could offer is to be at the hospital as an advocate. We didnt realize how important this was until we saw several nurses completely drop the ball when it came to being consistant with protocol. At one point one nurse looked at my notes to check on his input output of fluids. It was very frustrating- There were also obvious language barriers between most nurses, and we couldnt understand them. At times I wanted to shout, "Im not ordering a coffee here, this is serious stuff concerning my brother, speak ENGLISH!"
So, now we know better and will make every effort to be there more for round two.
Now he is home resting for next week.
Good luck!
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- February 14, 2012 at 2:17 am
Hi Jeff's mom,
I just wanted to let you know my brother(37) just got home yesterday after having spend the week in the hospital for IL2. He ended up getting 10 bags. His blood pressure kept dropping after the 3rd day, so it really slowed everything down. He had all the normal side effects, chills, fever, rigors, weight gain(20 lbs, none til the 3rd day, then he gained 10lbs in one day), he didn't eat much, and wasnt able to sleep due to all the people coming in an out of the room.
Some advice I could offer is to be at the hospital as an advocate. We didnt realize how important this was until we saw several nurses completely drop the ball when it came to being consistant with protocol. At one point one nurse looked at my notes to check on his input output of fluids. It was very frustrating- There were also obvious language barriers between most nurses, and we couldnt understand them. At times I wanted to shout, "Im not ordering a coffee here, this is serious stuff concerning my brother, speak ENGLISH!"
So, now we know better and will make every effort to be there more for round two.
Now he is home resting for next week.
Good luck!
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- February 14, 2012 at 2:07 pm
10 bags is really excellent – how is his recovery? Did his levels come back to normal – his nurse said blood levels will be back to normal 12 hours after the last infusion. Jeff really wants to go back to work next Monday – do you think he can do that?
Jeff is at Rush in Chicago and all I can say is that he is very lucky – nurses are fantastic and they are checking on him every 15 minutes (makes sleeping a little tough – lol). His specialist is an expert in IL2 and I swear, Jeff's symptoms (so far) are very tolerable (just some nausea right now and his heart rate is up). Although this is only the 2nd day, he says he is feeling good. We'll see what the rest of the week brings.
I am sorry that you had such an experience at the hospital – where did your brother have his treatment? I feel fortunate that Jeff is such good hands 🙂 I wish you and your brother the very best of luck. Keep in touch.
Jeff's Mom
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- February 14, 2012 at 2:07 pm
10 bags is really excellent – how is his recovery? Did his levels come back to normal – his nurse said blood levels will be back to normal 12 hours after the last infusion. Jeff really wants to go back to work next Monday – do you think he can do that?
Jeff is at Rush in Chicago and all I can say is that he is very lucky – nurses are fantastic and they are checking on him every 15 minutes (makes sleeping a little tough – lol). His specialist is an expert in IL2 and I swear, Jeff's symptoms (so far) are very tolerable (just some nausea right now and his heart rate is up). Although this is only the 2nd day, he says he is feeling good. We'll see what the rest of the week brings.
I am sorry that you had such an experience at the hospital – where did your brother have his treatment? I feel fortunate that Jeff is such good hands 🙂 I wish you and your brother the very best of luck. Keep in touch.
Jeff's Mom
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- February 15, 2012 at 11:07 pm
My brother had little to no symptoms until the 4th bag. Then the symptoms all started and lasted until he left. The 10th bag was by far his worst. He is at home now, he said the weight is slowly coming off. He has difficulty sleeping for more than 2 hours at a time, and that his skin has begun to peel.
He was at Mt. Sinai in Miami. My mother has written a long letter to the hospital staff so we are hoping that the nurses will improve next week for the second phase.
Thats great that Jeff has a wonderful staff and doctors! Does his doctor see him daily? My brother's doctor only came in each morning for 10-15 minutes, and we had to ask all the questions as quickly as possible.
My brother is not working and his doctor told him that he wouldnt feel like it and that mentally he wouldnt be right to work in that week off. He said his numbers would be all off. So, he has taken the week off to rest and recoop for the next round.
Good luck and please keep me updated as they are only 1 week apart from this treatment.
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- February 15, 2012 at 11:07 pm
My brother had little to no symptoms until the 4th bag. Then the symptoms all started and lasted until he left. The 10th bag was by far his worst. He is at home now, he said the weight is slowly coming off. He has difficulty sleeping for more than 2 hours at a time, and that his skin has begun to peel.
He was at Mt. Sinai in Miami. My mother has written a long letter to the hospital staff so we are hoping that the nurses will improve next week for the second phase.
Thats great that Jeff has a wonderful staff and doctors! Does his doctor see him daily? My brother's doctor only came in each morning for 10-15 minutes, and we had to ask all the questions as quickly as possible.
My brother is not working and his doctor told him that he wouldnt feel like it and that mentally he wouldnt be right to work in that week off. He said his numbers would be all off. So, he has taken the week off to rest and recoop for the next round.
Good luck and please keep me updated as they are only 1 week apart from this treatment.
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- February 20, 2012 at 3:58 pm
He just finished his first week. He did 12 bags and was doing great until the 11th and 12th treatments. His symptoms were the usual – nausea, fever, bloating, etc. He gained 10 pounds and that is already gone. He is sleepy and very tired – feels like a truck hit him.
He will have 2 weeks off and then will start his 2nd round on March 5th. Let me know how it goes with your brother. I hope he has an easier time this round. I wish him the best of luck with this…it's tough
Jeff's Mom
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- February 20, 2012 at 3:58 pm
He just finished his first week. He did 12 bags and was doing great until the 11th and 12th treatments. His symptoms were the usual – nausea, fever, bloating, etc. He gained 10 pounds and that is already gone. He is sleepy and very tired – feels like a truck hit him.
He will have 2 weeks off and then will start his 2nd round on March 5th. Let me know how it goes with your brother. I hope he has an easier time this round. I wish him the best of luck with this…it's tough
Jeff's Mom
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- February 20, 2012 at 9:29 pm
Thanks for the quick reply. Glad your son is doing well. I was wondering why he is taking 2 weeks off between phases? I thought they are supposed to take one week off? My brother just started again today, so it has me wondering if he could have rested for another week before putting his body through this again.
Thank you,
Kelly
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- March 2, 2012 at 7:47 pm
Just wanted to give you an update on my brother. During the second week was able to take in the same amount as the first week-10 bags, but he was delayed leaving the hospital until Sunday. He ended up gaining 44 lbs in that week, but lost it all in 4 days once home. Now, we wait for 6 weeks to see the scan…..
Good luck next week-
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- March 3, 2012 at 1:41 am
Dear Kelly,
Wow – 10 bags is great!! Your brother is a champ 🙂
My son is really suffering lots of side effects (after 2 weeks off) – tired (completely exhausted), bulging eyes and racing heart. His doctor tested him – thyroid issues. Not sure if it's a permanent condition – will retest him again next week, and they're delaying his next treatment until the 12th. I am worried about him. He is just not bouncing back from this. How is your brother – does he sleep a lot? Is he nauseated? I hate the thought of Jeff having to go through all of this again AND then waiting so long for the scan…I hate this disease.
When is your baby due? My daughter is having #2 and is due May 14th (a boy to join big brother).
Let me know how your brother is doing and please keep me informed of his scan results – praying for good news for your brother and my boy 🙂
Jeff's Mom
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- March 3, 2012 at 12:43 pm
Sorry to hear about Jeff's reactions to the IL2. I hate this disease too. I feel so helpless, and it kills me knowing my brother has to suffer and go through all of this. Life can be so unfair. He is tired and weak. But its hard to tell if he is so tired due to lack of sleep at the hospital or from the IL2. It's a very powerful drug and its scary to think about what the side effects may bring. Its also so frustrating not knowing if its working, which if it is, then of course the side effects are all worth it.
This is my first baby(girl),and the first grandbaby for my parents. Its really hard being joyous or even thinking about anything else while my brother is suffering. His diagnosis came when I was 5 months pregnant, and its put all happiness aside. I just wish there was more I could do. All I do is spend any extra time researching this cancer, I believe knowledge is power, however at times its seem being ignorant of what could happen could be easier to get through each day.
My brother isn't really eating much, he is tired, pale, and weak. He has lost all the water weight, plus more weight. He goes in for more blood work on Friday. It sounds like your son's doctor is really on top of things.
I hope Jeff gets stronger each day. Please keep me updated as well.
Take care,
Kelly
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- March 4, 2012 at 4:26 pm
Dear Kelly,
It is so frustrating not knowing if the IL is working or not. I hate waiting…I am a kind of "let's go" person and I feel if this is not working, we need to get moving! So, I am always researching, too…hoping this thing works but wanting to be have a back-up plan in place in case it doesn't. I agree – knowledge is power, but there is so much scary stuff out there in regards to this disease. I have a new philosophy – when I feel overwhelmed by it all, I just give melanoma the finger (and mentally tell it to f#$% off). I don't know, it's weird, but it makes me feel better and I stop crying. Try it 🙂
I think your baby's birth will be a joyous time for you and a good distraction for your brother. Babies help keep us grounded in the present moment. She will be a delight for your parents, too.
I hope your brother gets stronger every day, too. I am hoping and praying for durable remission for both of our warriors. Keep in touch, and let me know how he's doing – praying for good scans!!
Bridgette (aka Jeff's Mom)
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- March 12, 2012 at 4:07 am
Hello Bridgette,
I just wanted to give you an update on my brother. He is 2 weeks out of the hospital since having the second dose of IL2. He just went back to work on Wednesday(10 days after getting out). He is still very tired, but sleeping for longer periods of time. He lost all the weight he put on in the hospital(44 LBS), plus an additional 12 lbs. So, since being diagnosed he has lost 22 lbs in just under 2 months. We still have to wait about 3 more weeks to find out if he is BRAF positive and a couple more weeks after that to see if the IL2 has been working. He is eating, but he is weak and tired.
I hope Jeff is feeling better from his initial treatment, I believe you said he is going back in next week. So, good luck.
Good luck and please keep me update!
Kelly
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- March 14, 2012 at 4:04 am
Hi Kelly,
Sounds like your brother is doing okay and is eating!! It's so counterintuitive to me – this treatment makes folks so sick in order for them to get better…
We have been at the hospital – Jeff's having his 2nd round this week. Unfortunately, he had a set back and the second IL2 treatment had to be pushed back. He had to have radiation when a tiny tumor near his back caused pain and nerve issues and he couldn't walk. The radiation knocked him on his butt!! But, he's back on the IL2 rotation and hopefully will get through it. He had some pretty sever rigors last night (really scary for me to see). They gave him the Demerol before his 3rd infusion this morning so he wouldn't have those awful shakes. Dose #4 at 8 tonight.
We know Jeff is BRAF + and that opens up more treatment options if IL2 doesn't work. He will be scanned around the beginning of April – probably around the same time as your brother. Just gotta get through the next few weeks.
Keep me informed of your brother's results. Enjoy your last trimester – my daughter is getting big!! She has 9 weeks to go before baby #2 is here. I am praying for you and your brother and your family.
Bridgette (Jeff's Mom)
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- March 14, 2012 at 4:04 am
Hi Kelly,
Sounds like your brother is doing okay and is eating!! It's so counterintuitive to me – this treatment makes folks so sick in order for them to get better…
We have been at the hospital – Jeff's having his 2nd round this week. Unfortunately, he had a set back and the second IL2 treatment had to be pushed back. He had to have radiation when a tiny tumor near his back caused pain and nerve issues and he couldn't walk. The radiation knocked him on his butt!! But, he's back on the IL2 rotation and hopefully will get through it. He had some pretty sever rigors last night (really scary for me to see). They gave him the Demerol before his 3rd infusion this morning so he wouldn't have those awful shakes. Dose #4 at 8 tonight.
We know Jeff is BRAF + and that opens up more treatment options if IL2 doesn't work. He will be scanned around the beginning of April – probably around the same time as your brother. Just gotta get through the next few weeks.
Keep me informed of your brother's results. Enjoy your last trimester – my daughter is getting big!! She has 9 weeks to go before baby #2 is here. I am praying for you and your brother and your family.
Bridgette (Jeff's Mom)
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- March 14, 2012 at 4:04 am
Hi Kelly,
Sounds like your brother is doing okay and is eating!! It's so counterintuitive to me – this treatment makes folks so sick in order for them to get better…
We have been at the hospital – Jeff's having his 2nd round this week. Unfortunately, he had a set back and the second IL2 treatment had to be pushed back. He had to have radiation when a tiny tumor near his back caused pain and nerve issues and he couldn't walk. The radiation knocked him on his butt!! But, he's back on the IL2 rotation and hopefully will get through it. He had some pretty sever rigors last night (really scary for me to see). They gave him the Demerol before his 3rd infusion this morning so he wouldn't have those awful shakes. Dose #4 at 8 tonight.
We know Jeff is BRAF + and that opens up more treatment options if IL2 doesn't work. He will be scanned around the beginning of April – probably around the same time as your brother. Just gotta get through the next few weeks.
Keep me informed of your brother's results. Enjoy your last trimester – my daughter is getting big!! She has 9 weeks to go before baby #2 is here. I am praying for you and your brother and your family.
Bridgette (Jeff's Mom)
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- March 12, 2012 at 4:07 am
Hello Bridgette,
I just wanted to give you an update on my brother. He is 2 weeks out of the hospital since having the second dose of IL2. He just went back to work on Wednesday(10 days after getting out). He is still very tired, but sleeping for longer periods of time. He lost all the weight he put on in the hospital(44 LBS), plus an additional 12 lbs. So, since being diagnosed he has lost 22 lbs in just under 2 months. We still have to wait about 3 more weeks to find out if he is BRAF positive and a couple more weeks after that to see if the IL2 has been working. He is eating, but he is weak and tired.
I hope Jeff is feeling better from his initial treatment, I believe you said he is going back in next week. So, good luck.
Good luck and please keep me update!
Kelly
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- March 12, 2012 at 4:07 am
Hello Bridgette,
I just wanted to give you an update on my brother. He is 2 weeks out of the hospital since having the second dose of IL2. He just went back to work on Wednesday(10 days after getting out). He is still very tired, but sleeping for longer periods of time. He lost all the weight he put on in the hospital(44 LBS), plus an additional 12 lbs. So, since being diagnosed he has lost 22 lbs in just under 2 months. We still have to wait about 3 more weeks to find out if he is BRAF positive and a couple more weeks after that to see if the IL2 has been working. He is eating, but he is weak and tired.
I hope Jeff is feeling better from his initial treatment, I believe you said he is going back in next week. So, good luck.
Good luck and please keep me update!
Kelly
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- March 4, 2012 at 4:26 pm
Dear Kelly,
It is so frustrating not knowing if the IL is working or not. I hate waiting…I am a kind of "let's go" person and I feel if this is not working, we need to get moving! So, I am always researching, too…hoping this thing works but wanting to be have a back-up plan in place in case it doesn't. I agree – knowledge is power, but there is so much scary stuff out there in regards to this disease. I have a new philosophy – when I feel overwhelmed by it all, I just give melanoma the finger (and mentally tell it to f#$% off). I don't know, it's weird, but it makes me feel better and I stop crying. Try it 🙂
I think your baby's birth will be a joyous time for you and a good distraction for your brother. Babies help keep us grounded in the present moment. She will be a delight for your parents, too.
I hope your brother gets stronger every day, too. I am hoping and praying for durable remission for both of our warriors. Keep in touch, and let me know how he's doing – praying for good scans!!
Bridgette (aka Jeff's Mom)
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- March 4, 2012 at 4:26 pm
Dear Kelly,
It is so frustrating not knowing if the IL is working or not. I hate waiting…I am a kind of "let's go" person and I feel if this is not working, we need to get moving! So, I am always researching, too…hoping this thing works but wanting to be have a back-up plan in place in case it doesn't. I agree – knowledge is power, but there is so much scary stuff out there in regards to this disease. I have a new philosophy – when I feel overwhelmed by it all, I just give melanoma the finger (and mentally tell it to f#$% off). I don't know, it's weird, but it makes me feel better and I stop crying. Try it 🙂
I think your baby's birth will be a joyous time for you and a good distraction for your brother. Babies help keep us grounded in the present moment. She will be a delight for your parents, too.
I hope your brother gets stronger every day, too. I am hoping and praying for durable remission for both of our warriors. Keep in touch, and let me know how he's doing – praying for good scans!!
Bridgette (aka Jeff's Mom)
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- March 3, 2012 at 12:43 pm
Sorry to hear about Jeff's reactions to the IL2. I hate this disease too. I feel so helpless, and it kills me knowing my brother has to suffer and go through all of this. Life can be so unfair. He is tired and weak. But its hard to tell if he is so tired due to lack of sleep at the hospital or from the IL2. It's a very powerful drug and its scary to think about what the side effects may bring. Its also so frustrating not knowing if its working, which if it is, then of course the side effects are all worth it.
This is my first baby(girl),and the first grandbaby for my parents. Its really hard being joyous or even thinking about anything else while my brother is suffering. His diagnosis came when I was 5 months pregnant, and its put all happiness aside. I just wish there was more I could do. All I do is spend any extra time researching this cancer, I believe knowledge is power, however at times its seem being ignorant of what could happen could be easier to get through each day.
My brother isn't really eating much, he is tired, pale, and weak. He has lost all the water weight, plus more weight. He goes in for more blood work on Friday. It sounds like your son's doctor is really on top of things.
I hope Jeff gets stronger each day. Please keep me updated as well.
Take care,
Kelly
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- March 3, 2012 at 12:43 pm
Sorry to hear about Jeff's reactions to the IL2. I hate this disease too. I feel so helpless, and it kills me knowing my brother has to suffer and go through all of this. Life can be so unfair. He is tired and weak. But its hard to tell if he is so tired due to lack of sleep at the hospital or from the IL2. It's a very powerful drug and its scary to think about what the side effects may bring. Its also so frustrating not knowing if its working, which if it is, then of course the side effects are all worth it.
This is my first baby(girl),and the first grandbaby for my parents. Its really hard being joyous or even thinking about anything else while my brother is suffering. His diagnosis came when I was 5 months pregnant, and its put all happiness aside. I just wish there was more I could do. All I do is spend any extra time researching this cancer, I believe knowledge is power, however at times its seem being ignorant of what could happen could be easier to get through each day.
My brother isn't really eating much, he is tired, pale, and weak. He has lost all the water weight, plus more weight. He goes in for more blood work on Friday. It sounds like your son's doctor is really on top of things.
I hope Jeff gets stronger each day. Please keep me updated as well.
Take care,
Kelly
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- March 3, 2012 at 1:41 am
Dear Kelly,
Wow – 10 bags is great!! Your brother is a champ 🙂
My son is really suffering lots of side effects (after 2 weeks off) – tired (completely exhausted), bulging eyes and racing heart. His doctor tested him – thyroid issues. Not sure if it's a permanent condition – will retest him again next week, and they're delaying his next treatment until the 12th. I am worried about him. He is just not bouncing back from this. How is your brother – does he sleep a lot? Is he nauseated? I hate the thought of Jeff having to go through all of this again AND then waiting so long for the scan…I hate this disease.
When is your baby due? My daughter is having #2 and is due May 14th (a boy to join big brother).
Let me know how your brother is doing and please keep me informed of his scan results – praying for good news for your brother and my boy 🙂
Jeff's Mom
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- March 3, 2012 at 1:41 am
Dear Kelly,
Wow – 10 bags is great!! Your brother is a champ 🙂
My son is really suffering lots of side effects (after 2 weeks off) – tired (completely exhausted), bulging eyes and racing heart. His doctor tested him – thyroid issues. Not sure if it's a permanent condition – will retest him again next week, and they're delaying his next treatment until the 12th. I am worried about him. He is just not bouncing back from this. How is your brother – does he sleep a lot? Is he nauseated? I hate the thought of Jeff having to go through all of this again AND then waiting so long for the scan…I hate this disease.
When is your baby due? My daughter is having #2 and is due May 14th (a boy to join big brother).
Let me know how your brother is doing and please keep me informed of his scan results – praying for good news for your brother and my boy 🙂
Jeff's Mom
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- March 2, 2012 at 7:47 pm
Just wanted to give you an update on my brother. During the second week was able to take in the same amount as the first week-10 bags, but he was delayed leaving the hospital until Sunday. He ended up gaining 44 lbs in that week, but lost it all in 4 days once home. Now, we wait for 6 weeks to see the scan…..
Good luck next week-
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- March 2, 2012 at 7:47 pm
Just wanted to give you an update on my brother. During the second week was able to take in the same amount as the first week-10 bags, but he was delayed leaving the hospital until Sunday. He ended up gaining 44 lbs in that week, but lost it all in 4 days once home. Now, we wait for 6 weeks to see the scan…..
Good luck next week-
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- February 20, 2012 at 9:29 pm
Thanks for the quick reply. Glad your son is doing well. I was wondering why he is taking 2 weeks off between phases? I thought they are supposed to take one week off? My brother just started again today, so it has me wondering if he could have rested for another week before putting his body through this again.
Thank you,
Kelly
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- February 20, 2012 at 9:29 pm
Thanks for the quick reply. Glad your son is doing well. I was wondering why he is taking 2 weeks off between phases? I thought they are supposed to take one week off? My brother just started again today, so it has me wondering if he could have rested for another week before putting his body through this again.
Thank you,
Kelly
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- February 20, 2012 at 3:58 pm
He just finished his first week. He did 12 bags and was doing great until the 11th and 12th treatments. His symptoms were the usual – nausea, fever, bloating, etc. He gained 10 pounds and that is already gone. He is sleepy and very tired – feels like a truck hit him.
He will have 2 weeks off and then will start his 2nd round on March 5th. Let me know how it goes with your brother. I hope he has an easier time this round. I wish him the best of luck with this…it's tough
Jeff's Mom
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- February 15, 2012 at 11:07 pm
My brother had little to no symptoms until the 4th bag. Then the symptoms all started and lasted until he left. The 10th bag was by far his worst. He is at home now, he said the weight is slowly coming off. He has difficulty sleeping for more than 2 hours at a time, and that his skin has begun to peel.
He was at Mt. Sinai in Miami. My mother has written a long letter to the hospital staff so we are hoping that the nurses will improve next week for the second phase.
Thats great that Jeff has a wonderful staff and doctors! Does his doctor see him daily? My brother's doctor only came in each morning for 10-15 minutes, and we had to ask all the questions as quickly as possible.
My brother is not working and his doctor told him that he wouldnt feel like it and that mentally he wouldnt be right to work in that week off. He said his numbers would be all off. So, he has taken the week off to rest and recoop for the next round.
Good luck and please keep me updated as they are only 1 week apart from this treatment.
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- February 14, 2012 at 2:07 pm
10 bags is really excellent – how is his recovery? Did his levels come back to normal – his nurse said blood levels will be back to normal 12 hours after the last infusion. Jeff really wants to go back to work next Monday – do you think he can do that?
Jeff is at Rush in Chicago and all I can say is that he is very lucky – nurses are fantastic and they are checking on him every 15 minutes (makes sleeping a little tough – lol). His specialist is an expert in IL2 and I swear, Jeff's symptoms (so far) are very tolerable (just some nausea right now and his heart rate is up). Although this is only the 2nd day, he says he is feeling good. We'll see what the rest of the week brings.
I am sorry that you had such an experience at the hospital – where did your brother have his treatment? I feel fortunate that Jeff is such good hands 🙂 I wish you and your brother the very best of luck. Keep in touch.
Jeff's Mom
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- February 14, 2012 at 2:17 am
Hi Jeff's mom,
I just wanted to let you know my brother(37) just got home yesterday after having spend the week in the hospital for IL2. He ended up getting 10 bags. His blood pressure kept dropping after the 3rd day, so it really slowed everything down. He had all the normal side effects, chills, fever, rigors, weight gain(20 lbs, none til the 3rd day, then he gained 10lbs in one day), he didn't eat much, and wasnt able to sleep due to all the people coming in an out of the room.
Some advice I could offer is to be at the hospital as an advocate. We didnt realize how important this was until we saw several nurses completely drop the ball when it came to being consistant with protocol. At one point one nurse looked at my notes to check on his input output of fluids. It was very frustrating- There were also obvious language barriers between most nurses, and we couldnt understand them. At times I wanted to shout, "Im not ordering a coffee here, this is serious stuff concerning my brother, speak ENGLISH!"
So, now we know better and will make every effort to be there more for round two.
Now he is home resting for next week.
Good luck!
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- February 12, 2012 at 5:05 pm
Jeffs Mom
MDX–1106 is designed to target PD-1, a receptor expressed on the surface of T-cells and MDX–1105 (Anti-PD-L1 Antibody) targets the PDL1 receptor on Cancer cells and APCs.
Here is a paper that may help you understand.
The B7 Family and Cancer Therapy: Costimulation and Coinhibition
https://www.box.net/shared/x4lp733yfz
Best regards,
Jimmy B
MDX–1106 is designed to target PD-1, a receptor expressed on the surface of T-cells and MDX–1105 (Anti-PD-L1 Antibody) targets the PDL1 receptor on Cancer
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- February 12, 2012 at 5:05 pm
Jeffs Mom
MDX–1106 is designed to target PD-1, a receptor expressed on the surface of T-cells and MDX–1105 (Anti-PD-L1 Antibody) targets the PDL1 receptor on Cancer cells and APCs.
Here is a paper that may help you understand.
The B7 Family and Cancer Therapy: Costimulation and Coinhibition
https://www.box.net/shared/x4lp733yfz
Best regards,
Jimmy B
MDX–1106 is designed to target PD-1, a receptor expressed on the surface of T-cells and MDX–1105 (Anti-PD-L1 Antibody) targets the PDL1 receptor on Cancer
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Tagged: cutaneous melanoma
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