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Interlukin-2 treatment

HeyRay
Posts: 18
Joined: Feb 2010

53 yr old male with some blood in urin. Scans revealed 10cm tumor on left kidney. Had radical nephrectomy with 11 lymphnodes on 13 Sep 09. Follow-up scans revealed stage IV metastasis. Eurologyst suggested Interlukin-2 Biological treatment. IL-2 is only known cure but low response <20%. This is high risk treatment but am going for Gold before i'll settle for anything less. Treatment starts next week. Any IL-2 treatment experiences out there?
Ray

Mookies Mom
Posts: 13
Joined: Jan 2010

Hi Ray,

I hope your recovery from surgery went well. We literally just got back home from the hospital after my 30 year old husband's left kidney radical nephrectomy and surrounding lymph nodes. We were told prior to the operation that because of the 10 cm mass in one of the surrounding lymph nodes, he was classified as stage IV. We are still waiting on the pathology results from the operation, which had to be sent out to a national lab. Both his oncologist & urologist have mentioned this Interlukin-2 as a possible treatment. It sounds like its very toxic and you have to pray that the cancer responds to it. The feeling I am getting from the docs is that this would be something we would consider after it has been determined that the various new drug treatments (Sutent, has been mentioned) did not work. Of course, since we are still waiting for the pathology results there hasn't been a solid treatment plan set just yet because the doctors are unsure of the kidney cancer sub-type. This last month for us for us has been a real roller coater. One minute I'm throwing him a surprise 30th birthday party and the next minute he's getting his kidney removed. Did you have any other symptoms besides the blood in urine? Did you see your doctor initially for a regular physical or was there another issue? My husband had no symptoms until he had some lower back pain with a shooting pain down his left leg. When the blood was found in the urine, we were told that it was probably a kidney stone. The scans revealed a 8 cm mass in the left kidney and a 10 cm mass in one of the lymph nodes. Have you already tried any of the drug treatments? How has your recovery from the operation been? My thought and prayers are with you.

HeyRay
Posts: 18
Joined: Feb 2010

No the only real symptom was heavy blood in my urine after horse riding, thought it was kidney stones, have had them before. Some back pain but i messed up my back a few months back and thought it was from that. My cancer is sub-type clear cell which is the most common. My reasoning for doing interlukin-2 first is because it has about a 8-15% chance of cure. No other treatment i know of has a potential for "cure" All others have potential for shrinkage and extending life. Heart and lungs must be strong with no brain metestasis because the treatment kicks ur butt. So wanted to be aggressive at going after the cancer while at my strongest point. Can fall back on any of the other treatments if Interlukin fails. Symptoms accross the board for most treatments is pretty much the same. But Interlukin is "high risk". will be in ICU for 5-7 days, then home for 9 days, then back in ICU for 5-7 more days. Then they will evaluate the response at some point. May do it all again if i have a response. But if no response, then they won't offer it again. Pretty strange right now with only mild tiredness and mild stomack pains occassionally. Other than that I feel ok. Interlukin is not really toxic, it is a natural protein that ur body produces to start up ur immune system. The treatment just uses high dose and puts ur immune system in over-overdrive. Doc told me it's like having the flu on top the flu on top the flu again. Bolus (i think thats what it's called) injection (15 minute injection) every eight hours of high dose IL-2 for maximum of 15 injections really gets the immune system working. Thanks for writing back to me. hope this information helps in your husbands decision making process.
Ray

HeyRay
Posts: 18
Joined: Feb 2010

Realized i did not answer ur question about recovery. Doc told me 6 weeks and things would start to feel better. My surgery was in thru the front so had big incision. Recovery was rough... I lost 20lbs because of nausia and stomack aches. Had some problems with my chemical balance, potasium and calcium, caused me to be dizzy and nausiated alot. Finally after 2 months these things faded away slowly. I actually went to a stomack Dr. because the pain pursisted so long and my surgeon couldn't explain why. More tests, but everything was fine, symptoms finally went away for the most part. IL-2 will be the first treatment for me. Hope and pray ur treatment is successful.
Ray

HeyRay
Posts: 18
Joined: Feb 2010

Don't want to be rude, but i just got accepted for Disability through the Social Security Administration. Don't know your situation, but disability for our diagnosis is practically automatic. Let me know if u want more information.
Ray

HeyRay
Posts: 18
Joined: Feb 2010

February 24, 2010 Since finding out that a 10 cm tumor was on his left kidney, Ray has contemplated his next steps. He had his kidney removed September 14, 2009. The following months were with pain and anxieties of what to do. After several visits at Baptist and many more scans, he was to start his Interleukin 2 (IL-2) treatment. We arrived shortly before noon, and we were waiting for a room assignment. Before arriving at the Bone/Marrow Transplant Unit, we had a peaceful lunch in the cafeteria. Ray was anxious in getting ahead of the cancer growth. He would have started the treatment the day after surgery, but kidney cancer doesn’t always play by the book. The docs don’t want to start something if the cancer isn’t growing. So, three months after removal you wait to see what the cancer plans on doing. In our case, the scans showed new growth so, that’s why we’re here.
After arriving to his new home for the next 5-7 days, he had a few more tests before the first treatment dose was given. A PICC line was in place, the EKG and the X-ray were all good. The treatments are given at 0800, 1600 and 0001. Since everything took a little longer, his 1st dose wasn’t given until February 25, 2010, 0001. He had a great lunch and dinner; settling down to some Olympic watching before starting his IL-2 journey.
February 25, 2010 Ray was all smiles has he started the first dose. He didn’t feel any different; his temperature (temp) and vital signs (vs) were good. He ate a large breakfast (for him) which included: a cheese omelet, cheese grits, hash browns, coffee, and juice. His 2nd dose went with no difference. Lunch was another great meal for him. I took a quick walk before the 1600 dose. Again, he felt pretty good after the 3rd dose and only complained of a slight rush to the forehead. He only ate a small portion of his dinner. Even after drinking several cups of coffee and water his urine output had dropped. His vital signs were border line, but he would get his 4rd dose at midnight. His skin was turning red and his eyes were becoming blood shot. The swelling had started around his eyes and it was moving into his feet.
February 26, 2010 Ray had a very rough night. Shortly after 0200, I woke up to a loud hurl. He had reached down behind his bed and gotten his pink bowl. The next several minutes were followed with an outpouring of vomit (900 cc). This was followed by another output around 0400 of (400 cc). After this event, his head was throbbing. The nurse was so caring and wanting for things to be better. His B/P was dropping, and his temp was going up. He was given Dopamine (6 mcq), to help with urine flow and to raise his B/P. They wanted the screen to read something like: 90/60 (above 60). His was dropping down to 83/41 (55). His O2 level was also affected, so he’s wearing a nasal cannula with 0.5 L.
Breakfast was a liquid diet. He couldn’t stand the thought of food at this point. Breakfast included: coffee, water, and a small cup of cranberry juice. Before receiving dose 5, they wanted to get ahead of the nausea. His urine output has increased but the B/P is going lower 73/38 (47). 1145 the nurse just increased the Dopamine (9 mcq), and round 5 is another rough one. Since finishing it, he’s all over the bed. His legs are very restless, and he is trying to get up every few minutes. He just tried to undo his IV drips to go for a walkabout. He can’t get up until his B/P is higher. I’m having to watch his every move (1200). The Dopamine drip was just increased to (10 mcq) and the B/P reading is up 115/56 (76). They want these numbers before they lower his dose. And then he can go for a walk. He had ativan and that’s helping. 1215 he covered himself up, and he’s closing his eyes for now. He needs to rest for now because the next dose is just around the corner.
1250 His temp is good, but he’s starting to have uncontrollable shakes. Saying that he’s getting a temp, but it’s normal. Covered him up with 4 blankets and turned the heat up to 75. Another good B/P reading, so the Dopamine was lowered to (8 mcq). Lunch is coming, but I can’t see him eating anything this time, either. As soon as he has a good B/P, it goes up just as fast. So, Dopamine is up again. What a balancing act this treatment is. The nurses are in and out of the room changing the dose flow. I can’t see me going for a walk today. I just don’t want to leave him at all. Not knowing the next moment in this treatment is frightful, but I’m trying to be uplifting as each moment ticks away.
1310 Nurse checking B/P manually 80/60 and asking him the date. He’s still chilling and looking to me for answers. But he knew the date and month. After several changes in dose flow, they finally found the B/P medication,and Phenylephrine that works for Ray.
1430 His heart rate went to 118 and the B/P was 105/72 (82). I took a quick walk around the block and when I arrived back he was waking up from his slumber. He was out of it for some two hours. The nurse just finished assessing him so that the doc can ok the next dose.

HeyRay
Posts: 18
Joined: Feb 2010

Feburary 26, 2010
1430 His heart rate went to 118 and the B/P was 105/72 (82). I took a quick walk around the block and when I arrived back he was waking up from his slumber. He was out of it for some two hours. The nurse just finished assessing him so that the doc can ok the next dose. We were informed that Ray wouldn’t be getting his 6th dose at 1600 today. Doctor wants Ray to have a rest period before starting with the 7th dose. They continue counting the doses even if you miss one. Ray had a restful afternoon compared to the last 12 hours. He was able to sponge bath, play on the computer, and even eat a light dinner which included: fresh fruit, yogurt, cottage cheese, and two fruit drinks. With dinner complete, 2000, he’s once again resting his eyes, “sleeping”. We’re now waiting for the 7th dose at mid-night. Vital signs have been good for the past several hours.
February 27, 2010 The night was somewhat peaceful. Ray didn’t receive the last two doses of the previous day, 2/26/10. His B/P just wasn’t regular enough. They wanted to give him a good rest period and hopefully start again this morning. It’s 0735. The nurses have listened to his chest, and he continues to try and sleep on his side. The readings aren’t as acquired, so he has to roll onto his back again. I ordered the same food for breakfast because he tolerated the lighter menu better.
Shortly before 0800, Ray informed me that they told him last night; this was the end of Phase 1. His B/P was giving them a lot of problems, so he’s to go home and rest for Phase 2. Start date for Phase 2 is scheduled for March 16, 2010.
We just were informed by the nurse that 5 doses wasn’t bad. The average seems to be around 8 with 14 doses being the maximum in one Phase. Having a low B/P to start with isn’t always the best thing when starting this treatment. Figure. She also explained the (#) really well. They want that # to be above 60 because it's all about the urine faction of the kidney. Since Ray only has one kidney, they want to watch that very closely. Ray’s pretty disappointed with the first outcome because he wanted as much of this IL-2 as possible. Now they start getting the 11+ lbs off. Another 1 ½-2 days in the hospital. He really feels that he could have completed another dose, but the meds weren’t given early enough when he first was nauseated and had a slight temp. And the B/P issue was the main concern. We hope this issue is addressed completely so that Ray can have all he can during the next Phase. Everyone has been great at the hospital. We are blessed to have this opportunity to fight this terrible disease. Ray will be back with you all soon. I pray for each and every one of you; may this encourage you to seek further information on this treatment.

HeyRay
Posts: 18
Joined: Feb 2010

February 28, 2010 By early last evening, Ray’s B/P was under control and the Ondansetron drip was stopped. He watched some T.V. and waited until 2200 for the PICC (Peripherally Inserted Central Catheter) line to be removed. A PICC is a tunneled catheter that is a small, soft, flexible tube. It goes through the skin into a large vessel (vein) just above the heart. His was leaking or it was his skin leaking out fluids; the pad was soaked every time so they decided to remove it. He would get another one on his next visit. He was hoping to settle down for a peaceful night’s sleep, but that wasn’t the case. They started his Lasix (fluid removal), and he had lost 6 lbs by 0600. Getting up to urinate every several minutes, and his skin starting to itch; kept him up the whole night.
0800 Waiting for his breakfast, the nurse checked him out. His lungs continue to be clear. His ears are draining, so someone is going to check them out. He will be getting another dose of Lasix and then we may go home late this afternoon. He’s off the monitors, and he has his street clothes on. He’s ready for a walkabout down the halls. Wanting to leave a note for the doc to come and find him. The other day when he went for a walkabout the nurse moved very swiftly down the hall to check his B/P. He wasn’t to leave the room at that point because he was on B/P meds. His was 90/60, better when he was up and moving. He didn’t know that then but now he needs to wait for the doctor to make his rounds. He’s pacing the room with a cup of coffee in hand.

March 1, 2010 0700 Ray had a great sleep last night. He was restless yesterday afternoon and evening; he was given an ativan around 2200 and that did the trick. We walked to the cafeteria yesterday afternoon and had a smoothie; that was the extent of his activity. He did have an hour nap, and he said he was drained of any energy. He didn’t eat breakfast yesterday, but lunch was great; small dinner. Today is another day.
0730 V/S were taken and he’s still sleeping. We should be discharged today, sometime. Plan to order another light breakfast, maybe he’ll eat something. The fluid is off, and he’s looking like Ray again. He is still having some problems with his sinuses and ears. The continent air flow in the room works on your mind as well. Ray heard country music several times, and he asked me if I was hearing anything. We don’t know if this is part of the treatment or the room acoustics. Up and using the urinal; knew that someone stuck him and that he took some meds early this morning. He just removed the tape (he hates tape). So, he knows that he wasn’t awake when lab came in. Doctor just made rounds, seems as though, we may be here until tomorrow (3/2). They want to get more fluid off, but he is already below his entry weight. I guess we just wait and see what happens.
0800 Ray is starting to eat some breakfast.

HeyRay
Posts: 18
Joined: Feb 2010

WOW what a week! Just read over the updates that my lovely wife made for me while I was receiving the treatment. Well that pretty much sums up the week. The side effects at home have warn off finally. Iching nearly gone. Skin on face still looking like I'm peeling from a bad sunburn. I think the dry skin on face was caused by the air vent above my bed blowing continuously on my face. No flaking skin anywhere else. I won't be under another vent like that next time, or I'll block it off. I slept all the way home, 2-hour drive, the rest of the day, and all night. Really weak and tired for two days, but am up and about and feeling pretty good. Had to go to the local hospital to get some blood drawn. My Nurse was specific that she wanted a blood work-up while i was at home. Well i guess the next update will be 16 Mar 2010, when we go in to do it all again. Till then, keep fighting.
Ray

Mookies Mom
Posts: 13
Joined: Jan 2010

Hi Ray,

I just wanted to say a quick hello. It sounds like you've had an exhausting past couple weeks. Words cannot completely describe how inspired I am by your and your wife's strength. It had to be so physically difficult for you to go through this treatment and so emotionally difficult for your wife to stand beside watching it all happen. God never gives us more than we can handle, and undoubtedly He knows that the both of you are incredibly strong people. I pray that phase 2 goes much more smoothly and that this does end up ridding you completely of this nasty disease.

My husband just had another biopsy performed yesterday. It appears that the cancer has already spread to his spine. Depending on how the results come back and what they think they can do for the lesion on his spine, it is looking most likely that he will also starting Interluken-2 treatments soon.

You and your wife continue to be in my prayers. Enjoy the break and your time at home before the next round.

jenbenbrit
Posts: 2
Joined: May 2012

I'm so sorry for you and your wife. Your story sounds similar to my husband's. He was 50 when he had blood in his urine and we thought he had kidney stones. He had a tumor in his right kidney the size of a golf ball. My husband had his right kidney removed five years ago, he has had his spleen removed and a third of his pancreas removed. Next, just a year ago, a lung resection, a removal of a tracheal node and an emergency surgery because of bursting stitches and fluid in lungs. Latest scan, spots on nodes near heart may or may not be operable. Nothing but resections so far. Please, what are your thoughts and opinions? Doctor is talking about a drug but not sure what it is, yet. What do you think about Interlukin? This is stage IV, is it not? Thank you.

jenbenbrit
Posts: 2
Joined: May 2012

I'm so sorry for you and your wife. Your story sounds similar to my husband's. He was 50 when he had blood in his urine and we thought he had kidney stones. He had a tumor in his right kidney the size of a golf ball. My husband had his right kidney removed five years ago, he has had his spleen removed and a third of his pancreas removed. Next, just a year ago, a lung resection, a removal of a tracheal node and an emergency surgery because of bursting stitches and fluid in lungs. Latest scan, spots on nodes near heart may or may not be operable. Nothing but resections so far. Please, what are your thoughts and opinions? Doctor is talking about a drug but not sure what it is, yet. What do you think about Interlukin? This is stage IV, is it not? Thank you.

foxhd's picture
foxhd
Posts: 1899
Joined: Oct 2011

Cancer with mets is basically stage 4. Interluken is a powerful treatment requiring inpatient stay and usually in an ICU. It has cured a small number of people. But as I found in my journey to recieve interluken, you can't just get it anywhere. It was at my 3rd cancer center that I finally found a place that would provide it. Fortunately, they also had other options that the previous centers could not offer. So find out what drugs your doctor has in mind before committing to any single treatment. Also consider clinical trials. Some of the clinical trials have strict requirements and can be unavailable based on previous treatments. You've got plenty of homework to do. So read through these posts carefully.There is a lot of info here. Best wishes.
Fox

snydergirl
Posts: 15
Joined: Dec 2011

My husband was diagnosed last November with Stage IV, grade 2 clear cell RCC, radical nephrectomy of the left kidney on 12/29, 10 cm tumor, pathology T3a,NxMx. There are no other mets, just positive (enlarged) lymph nodes. We have asked repeatedly for a biopsy of a lymph node, especially since his pre and post surgery scans show no sites of mets except for these enlarged lymph nodes. Moffit confirmed the grade as 2-3 predominately 2, he completed his first round of HD IL-2 at Moffit in Tampa Saturday, April 22, the first week he was able to tolerate 7 doses, the second week, he tolerated 4, when it was time for the 5th dose, his blood pressure was 83/58, they asked if he wanted dopomine to bring up his blood pressure and increase urine output, he declined, Dose #3 had brought on the worst rigors that he had and they had a hard time controlling them, so they lasted for almost an hour. We are now in a holding pattern for a month until we go for his restaging scans, we were also told 3 years if he did absolutely no treatment at all.
Jeanne

alice124's picture
alice124
Posts: 860
Joined: Mar 2012

My husband underwent HDIL2 (high dose interlukin 2) early this year. His doctor recommended it because it is a tough regime and he felt--because my husband was relatively strong at this point--that it was best to start with hardest first. He had 14 doses (the maximum) during the first regiment and 10 doses during the second. They constantly monitor you in a ICU like environment and if your pressure falls too low or your fever runs too high or you become extremely dehydrated (or a combination of many side effects), they will skip a dose and then continue once your vitals become normal again.

He, unfortunately, did not benefit from the HDIL2 treatment. One of his lung mets did shrink, but three grew, and two new ones appeared.

He is getting ready to start a MDX1106/Votrient trial that we hope will prove more successful.

Good luck to you and your hubby. Keep us posted and let me know if you have additional questions.

strongmind
Posts: 24
Joined: May 2012

Hi I am new to this forum. My husband 32 years old, was diagnosed with RCC stage IV, small mets to lungs in March 2012. Last month, april 12th he had laproscopic nephrectomy. He is doing good post surgery. Started driving around after 3 weeks, gaining weight, feeling better. His HD IL-2 treatment is going to start from May 21st at Boston. Reading about side effects, I am nervous. Are those too intense even for a healthy young patient?

Thanks,

cfegles
Posts: 3
Joined: May 2012

Hi There, I'm new also and my husband is starting HD IL-2 monday the 21st at OHSU in Portland OR. His symptoms (1st blood in urine)started just days after Christmas 2011. Still learning and discovering resources but would love to share and know someone else that is going through this. Sincerely, Chris

alice124's picture
alice124
Posts: 860
Joined: Mar 2012

Hi Strongmind,

Let me begin by saying I'm sorry you have to join this Board, but you are in the right place. I just responded to Chris and here's the part where I refer to John's experience with HDIL2. With your husband being young and healthy, he'll do fine I'm sure. It's not pleasant but he has youth and health on his side. Those two facts with the support of this Board are a winning combination.
______________________________________
While everyone's side effects to HDIL2 are different, my husband went through the first treatment with non-severe side effects. In fact, he had the maximum doses (14) during the first round with only mild side effects while in the hospital. He did experience more discomfort once home with a long (3 week) bout with intense itching (pruritis), red skin, peeling, esophogitis, achiness, general fatigue, and weakness. It postponed his second round of treatment until early February 2012.
The second round was tough. He experienced many of the nasty side effects and was miserable the entire time. For four of the five days he was bed ridden with too low blood pressure, terrible nausea, capillary leakage, and flu-like symptoms. This time he completed 10 doses. Once he was home, he remained weak and drained for several weeks.
On March 15, he had a catscan that reflected one lung met had decreased in size, three mets had increased in size, and two new mets. The catscan did not merit continued HDIL 2.
Despite the lack of progress after the HDIL2 (though there still may be some latent benefit), John does not regret the HDIL 2 treatment. He's glad he went for the GOLD* (*cure).

Know that you and your husband are in my thoughts and prayers. Stay strong and keep us posted.

foxhd's picture
foxhd
Posts: 1899
Joined: Oct 2011

When I read these things I again count my blessings. I went to Yale begging to start the IL2 as soon as possible. I didn't care how bad the side effects might be. I knew I was probably going to be dead real soon anyway. And along came MDX-1106. The IL2 remains an option in the future.

strongmind
Posts: 24
Joined: May 2012

Thank you Alice124.

Yesterday my husband had Brain MRI which showed few very very tiny mets on his brain. So this monday he is going for cyberknife surgery and a month later IL-2 will start. Doctor said these mets are very very tiny , so should not be problem for IL-2. We just want this cancer word to be out from our lives forever. Infact from anybody's life.
thanks for prayers.
May I ask what treatment your husband had after IL-2 didn't work?

alice124's picture
alice124
Posts: 860
Joined: Mar 2012

Strongmind-John started a clinical trial of MDX-1106 and Votrient on May 10. This entails his going to Hopkins every three weeks for an infusion of the MDX-1106 and daily doses of Votrient. He's a little a week into this treatment and so far, no nasty side effects so we're hopeful for success.

Early review of MDX-1106 experience has been uplifting in many cases. You may have read about Fox's MDX-1106 progress. He initially was going for the HDIL-2 treatment but went for the MDX-1106 instead. He has done very well so far. I'll keep you posted on John's status.

Know that I'm thinking and praying for you and Brian and his Monday cyberknife surgery. Stay strong, think positively, and have faith. This board will help you get through this; use us.

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