Round 1 of IL-2 complete - questions before round 2

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2/28/2011 3:21pm
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Replies: 15

Hi everyone, i am in Pittsburgh and just finished round 1 of IL-2 at UPMC. I am being treated by Dr. Kirkwood. Right now i look like the Michelin Tire man - with really bad acne. Day 3 into the treatment I developed all these white pustules (gross I know) all over my face, neck chest and shoulders. They then broke and began to bleed. Has any one experienced this? We are staying in town for two weeks before round 2 starts and I need to know if there is any way I can prepare my skin for the next round? All the staff at the hospital were great giving me benedryl, lotions, etc but not able to help me further. After the 2nd round is complete we will be flying back to Winnipeg Manitoba and I am not looking forward to flying in this condition. The fact that I gained 40 lbs of water weight that is slowly coming off doesn't help either. I am thinking of cabin pressure on the plane.

Are the symptoms during the rounds always the same? Hopefully not worse. By the way the IL-2 tip sheet posted by another of our forum members (sorry can't remember her name) was INVALUABLE. I would have been lost without it!

Glad to hear you completed Round 1 DING DING DING!  Skin problems are harsh with IL-2.  The skin on my face literally fell off in sheets.  In fact the skin on my eyelids peeled 3 times in one week.  It was the most extensive Chemical Peel any plastic surgeon could provide!  

I used Mary Kay Night Emollient several times a day.  On my body I used Burt's Bees Balm Shea and Coco butter.  

Quick showers are best.  But, use only tepid water and NO soap (dries out your already dry skin) and pat dry your skin.  

I hope you were given Lasix for help you loose the excess body fluid.  It took me about 4 days to loose all the fluid.  The skin problems took longer. 

When you said 'round 1'...did you mean week 1?  Usually treatment consists of 6 weeks / 3 rounds of infusions.   How many infusions did you tolerate?  

I finished IL-2 treatments in 2008....and remain NED, No evidence of disease, today.  If I can do it ....so can you!

 

My best to you ~!!  If I can be of any help contact me at:  grdngt@aol.com

 

Debbie Stage 4 NED

 

Hi Debbie;

 

Thanks for the great info!  First off, I have a hard time with all the lingo - rounds, sessions, etc.  I was in hospital for 5 days, now out for two weeks, then back in for another 5 days.  After that I fly back to Winnipeg where I will be scanned to see if there is any improvement.  If so, I will be back here for another 5 days in, 2weeks out, then 5 in.  By the way I got 11 bags without skipping any.  Drs were very happy with that.

When you started week 2, Did all the side effects just get worse or remain the same?  Had your skin started to improve then get worse again?  Another thing, my eyes are stinging so badly I can barely keep them open.  Was that a problem with you?

Again thanks for all the valuable info. 

Hi,

I have a question, after reading your profile, I cant see how you are stage 4......it seems that all your melanoma has been in your left leg, and that you have had one positive lymph node, making you stage 3a. Yes you have had other melanomas, not sure if they are metastases or primaries, you dont mention what the pathology reports are for these. But as you have not had a spread past the nodal basin, your groin, doesnt this make you only stage 3a?? I dont get the stage 4 part. Perhaps your initial mole was a Clark's level 4?? Sometimes people hear this and think they have stage 4 cancer.

 In any case, you are doing Il-2, which has been offered to me as a resected stage 3a melanoma patient, with numerable mets. I was offered the Ipi trial and am doing that and so far have had a complete response. 

Good luck with your next round, and no matter what stage you are, 3 or 4, I hope you have a complete response. I am hoping that you can clear this mystery of what stage you are up, and maybe others can step in and help explain also.

Cyber hugs,

Vermont_Donna

stage 3a

Hi Vermont_Donna,

When I had the mole removed in 2007 the surgical oncologist sat me down and told me it was stage 4 and would probably come back elsewhere.  In Canada they don't give you a lot of the details and at the time I guess I was in shock and never thought to ask.  Since then my pathologies have been sent here to Pittsburgh and Dr. Kirkwood has indeed told me that it is stage 3 (sorry can't remember  the a,b or c)  On my last CT scan in Winnipeg they did see two tiny spots in my lungs but again Dr. Kirkwood here saw nothing when he read the same scan.  I also have a 2 cm bump which developed near the scar tissue where I had the lymph node disection.  Whether that changes the staging or not I am not sure.  I hope this clears up the mystery a bit.  As far as IPI goes, I qualify for it if I fail this treatment.

Thanks again.

ValJane

Hi ValJane,

No, a 2cm bump near the scar tissue would not change your staging...it could be a metastasis from the primary or something else entirely different. Was it biopised? As your melanoma is in your leg, and the positive lymph node (sentinal lymph node) was in your groin, the melanoma would have to be found BEYOND the nodal basin (ie left groin area) and to be located in an organ, ie brain, liver, lung, etc for you to be stage 4. Its really unfortunate that more info was not given to you by your Canadian doctors. But I think your Pittsburgh MD is correct. I dont know about the lung nodules but if Dr Kirkwood is a melanoma specialist then I would go with what he is thinking. Of course you will be rescanned and that will be important.

I'm not trying to be nit picky, just didnt want you to be thinking stage 4 when you are most likely stage 3a. Someone reading your Profile may be confused reading your story and then worry about themselves being stage 4 if they had a similar situation.

Vermont_Donna

stage 3a

Regarding Staging - this is a handy sheet to download and refer to regarding your stage:

http://www.cancerstaging.org/staging/posters/melanoma8.5x11.pdf

Our experience with melanoma: http://emandmichael.wordpress.com/

Thanks EmilyandMike,

The sheet looks very informative and easy to understand.  I will be printing it out when I get home.

ValJaneMB

If you have intransit mets, but not past the primary lymph node basin, I believe it is stage IIIB.  Stage IIIA would be 1 or 2 positive nodes, stage IIIB would be if you have intransits within the primary basin.  It would only be stage IV once it moves past that primary lymph node basin.  So it sounds like Val is not stage IV but stage III.

LOL!!  Val...You had better be accurate here...you get called out pronto!  LOL!  IL-2 is frequently given for Stage 3 and of course 4.  It has been found, if only a partial responder to IL-2 and then go on to ipi, there is an added benefit....seem to respond at a higher rate. 

ENJOY your 2 weeks off.  Each week  proved to be more difficult than the previous week.  KUDOS on taking 11 infusions!  No easy task.  Don't be surprised if you don't hit the 11 infusions mark next go.  I was told by my very wise, specialist....taking at least 7 treatments is the key!  

 

Your skin will still fall off.   I forgot to mention, I went to the SPA after each week and had warm oil applied to my skin.   That really helped.  And i loved the pampering.  

 

Your eyes burn...hard to keep them open and impossible to sleep.  The insomnia will hit and it gets pretty bad.  Have you MD order you a sleeper.  Ambien 10 mg.  should help.  

 

NOW RELAX....you earned it ....

 

Cheers...

 

Debbie Stage 4 NED.  

 

 

Hi, My Husband just finished his 2nd round of IL2. First week he did 13 bags, 2nd week he did 11 bags then developed some heart arithymia, which is fine now. The water went away with Lasix. His skin did peel and we used "Aveeno" with oatmeal lotion, worked great but you have to keep doing it we found. His eyelids were sore but I kept up creaming them, my hubby just would look at me when he saw me coming towards him armed with the cream, he hates cream on his face etc. He is eating great, gained weight again. He really had no appetitie while he was getting the treatment for 5 days. We go on Thursday March3rd to see the Dr for blood work and a check up and then we will be given scripts to get pictures done. I am dreading it, so anxious. I pray that it looks better than after the 3mths of chemo he had. He is very quiet at the moment, I guess not knowing what to expect. We go to the John Thereur Cancer Center in  Hackensack, NJ. Wonderful people there. They never found any moles or lesions etc, it was spotted accidently while getting a chest x-ray for a bronchitis that he had. I often wonder if he did not go for that x-ray, where would we be today?. This was in Jan 09, 2 lung surgeries later, we are still battling along with it. It is such an insidious disease, it completely turns your life upside down. He is 69 and retired after 45yrs as a Longshoreman, never smoked either. Who knows, only God does I guess.

Hi Anniepans,

Wow!  Your husband certainly did well with 13 bags then 11.  I  hope his ability to 'go the distance' with the treatments shows with good results from his bloodwork tomorrow.  Thank goodness for that chest x-ray he had.  Melanoma is so  misunderstood.  Take care both of you.

Short answer, each cycle is different as far as side effects.  As a general rule you do less IL-2 the second time through, your body reaches toxicity sooner.  The itchiness remains and will do the same thing all over again.  I had several "peel line layers" on my heels.

You can see my posts of when I went through IL-2 this summer.

First cycle ended due to complete renal shut down, bleeding, anemia, liver enzymes starting to rise, and inability to keep up with the various electrolyte abnormalities and subsequent heart arrythmias.  The fact I started bleeding from my kidneys and stopped making urine all together is what stopped me at 13 bags.  I also had severe diarrhea in spite of meds which is why we had soooo many of my electrolytes messed up.

Second cycle was called of by me.  I had picked up a cold between rounds and had ulcers on / in every mucosal surface of my body.  I had gained over 30#, my skin felt like it was going to split, and I had so much fluid in my lungs I couldn't lie down without gasping for air.  I couldn't swallow due to the sore throat.  Between not breathing and feeling like I was suffocating, and severe sore throat I felt like if I had a nother round of IL-2 I would die.  I did 10 bags that time.  After the first day and a half they had to do a bag, skip a dose, do another bag, skip a dose etc.  My heart, kidneys, liver, and electrolytes faired better though., and my diarrhea was well controlled this time (thank goodness, my butt was raw and I was in tears each time I went!)  My blood pressure never got above 55/30 and my heart rate stayted in the 150's.

My nurse said I had enough even though the doctors said I could continue.  Deep down I still feel like it would have killed me.  I made it through 10 bags the second time.

6 weeks later I was NED, and still am 7 months later.

Best of luck and I hope you join the 6% club as well.  If not, you have been through one of the toughest treatments they do to cancer patients.  Anything afterwards will be a cake walk hopefully.

Kim

Cancer Sucks Shit Happens Nothing is ever 100% bad, there is a reason and silver lining in everything. Sometimes I need a good light and my glasses to find it though. You can't fix stupid.

Kim,

My experience seems like it was a walk in the park compared to yours.  My blood platelet count was low and I had reached that maximum weight gain that the Dr. set at the beginning of the treatment, that is why they stopped my treatments.  I had some loose stools and one bout of vommiting, I am hoping that enough toxicity has left my body that I can last through 14 bags during round 2.

I pray that you remain NED.

ValJane

i just got done with my 2nd cycle of il-2 about 2 weeks ago and i go in for a CT on March 14. Depending on what the CT shows, it'll dictate whether or not I continue with IL-2. My question is, are they looking for a complete shrinkage of the tumors/lymphnodes the first scan, or is it partially supposed to go down? i'm confused.

“The secret of health for both mind and body is not to mourn for the past, worry about the future, or anticipate troubles, but to live in the present moment wisely and earnestly.” — Buddha

Hi Chet,

After I have my CT scans back in Winnipeg, If there is no change, or tumors/lymph nodes grow, I will not return to Pittsburgh for further IL-2 treatment.  Funny thing, I don't think anyone has mentioned complete response  - maybe it would be too early to tell or they don't want to give me false hope.  But if there is partial response, they want me back for another couple of rounds.  I am not sure if I will be offered IPI in Winnipeg at that point.

All the best with your scans on March 14th.

ValJane