New to board - Stage IV treatment decisions to be made!

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10/23/2010 6:07pm
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Replies: 29

Hi Everyone.  I have been lurking on this board for a few years now but now realize that by joining I will get the info. I need to help me decide on my next course of treatment.  As you can see by my profile, I am a 57-year old woman with what my Oncologist calls 'low bulk' disease even though it is Stage IV.  I would like to hear from anyone who has been through Interleuken 2 therapy.  As a Canadian, I will have to travel to Pittsburgh for treatments.  Right now, I do not know the hospital.  Everyone has posted lots of information on side effects, etc.  But how safe is it?  I have the following choices:  1.  wait and see with scans every 3 months.  2.  Dacarbazine treatment here in Winnipeg.  3.  Interleuken 2 treatment in Pittsburgh.  Which has a better chance of success?  Which treatment has the worst side effects?  Does anyone know how quickly melanoma progresses from the lymph nodes to other areas of the body?  That would help me with the 'wait and see' choice.  I forgot to mention that for some reason, the one year of Interferon does not make me eligible for IPI trials.  Only by trying and failing Dacarbazine or IL 2 will I be able to receive IPI.  Who knows why?  Anyway, I am thanking everyone in advance for responding to my questions.

Sorry to hear that you have joined the stage IV club, but no sense crying over spilled milk.

Option #3 Interleukin 2 has the most side effects and also the greatest chance of being successful.

Insert Generic Inspirational Motto Here

Hi Val Jane,

 

I can't answer all your questions but I probably can answer a few.  I have not done IL-2 but I have been a Stage IV patient for 5 years now.  I understand that the side effects of IL-2 are much more severe than Dacarbazine.  When receiving IL-2 you will have to be admitted to the hospital usually for about 5-7 days with each round.  Dacarbazine is usually given as an outpatient.

 

I wouldn't choose a "wait and watch" approach with confirmed active disease.  I know others that have had active disease confined to a limb and have had an isolated limb perfusion/infusion.  Two people that come to mind are Donna in VT and Rocklove.  I know Rocky has had a recurrence since then and I think Donna might have as well.

 

There is no correct answer as to how quickly melanoma can progress from lymph nodes to other areas.  Some people never progress beyond the lymph nodes.  My disease progressed from the lymph nodes to my liver within 15 months and that was after a groin lymph node dissection and 12 months of Interferon.

 

Hopefully, some IL-2 responders will see your post.  Jane from Maine and DebbieVA had a complete response to IL-2.

 

Stay Strong
King

Stage IV 7/05 Liver mets

Hi King,

 

Thanks for the information.  I will check the posts from Jane from Maine and DebbieVA.  I have mentioned ILP a few times when meeting with my Oncologist.  He doesn't see it as a possible treatment at this time.  In the meantime, I will try to think positive thoughts.  Stress and lack of sleep are taking their toll.  I know that I should stop working full time, but I find that it is a distraction and I guess I am trying to hold on to a 'normal' life. 

Here is a link to Jane's website.  Click on the IL-2 Tip Sheet if you haven't already seen it.

http://www.operationsunshield.org/

I understand about the work issue.  I kept working (or taking medical leaves) as long as I could.

Yes, stay positive and hang onto hope.

Stay Strong

Kathie

Dear Val Jane

Sorry you have joined the stage IV club.  I am currently on compassionate 'ipi' trial in Montreal. I am rather confused as to why your doctor is suggesting Pittsburgh.  I believe there are IL-21 treatments in Canada..for instance, in Montreal and possibly Edmonton. Also, you would have to ensure that any other form of care in Pittsburgh is covered by the clinical trial....e.g. doctor's visits, hospital costs, scans, otherwise it could get costly. From what I hear Dr. Michael Smylie an Medical Oncologist at the Cross Cancer Institute in Edmonton comes highly recommended, is there any chance of going to him for a second opinion.  He also is involved in many of the latest clinical trials.  Also I believe, ipi is available in Edmonton (Cross Cancer), Toronto (Princess Margaret) and Montreal (RVH).

I did the interferon route (recurrence) and then more surgery (recurrence again) then I did one round of temodar - 5 days (oral chemo) in order to qualify for the compassionate ipi trial...temodar did not work (chemo only works for a very few).  It was costly but LESS harsh than the dacarbazine option. Quebec medicare did not cover temodar but would have covered dacarbazine probably that applies to Manitoba as well..but my husband's health coverage from work covered 90% of the temodar. The cost was $4000 for one week of pills and I paid $400 of that...do you have any health coverage at work?  If you took dacarbazine you would have to do at least one round then off for 30 days before acceptance into ipi.

As for how quickly melanoma progresses...I believe that melanoma does what melanoma wants to do and it would be impossible to give an educated guess as to time frame.

Best wishes, Val

Live Laugh Love
Nothing is worth more than this day!

Hi,

The person I was primary caregiver for, Will, underwent IL2 treatment (high dose) and was a responder but not a long term responder.  However, I am sure that if I were looking at treatment options, it is one I would go for because there ARE long term (durable) responders and that is a chance worth taking.  He had a lot of temporary side effects and that is why it's done in the hospital but rebounded fairly well from it. 

Have you had genetic testing done?  That is something I think we waited too long to get done; having some of that info early on would have perhaps changed some of the course of the treatments we chose.

Hi Lori,

 

I have never thought of having genetic testing done, but I am wondering if the fact that I tested negative for the BRAF gene might be a clue as to which future treatments I would respond to (either short or long term).  Would that be done through blood tests taken at your regular Dr? 

Thanks.  I am very pleased with all the valuable data I am receiving from all posters.

I would find out if you are positive for C-Kit and also HLA A2.  The C-Kit would need to be done from a biopsy (tissue from your original biopsy should be fine) and the HLA A2 can be done through bloodwork.  Not sure what sort of a doctor you are seeing but he could have the blood drawn and sent to somewhere that could test for the HLA A2 antigen.

I know some people have a full genetic testing done - I recall Sharon (always thinking of her) had it done through - UCLA?  Some California medical center, in any case.  There are many mutations they can test for.  V600E, K, C Met, C Kit, and others.

Thanks, again.  My Oncologist will be bombarded by my questions.  If they sent away tissues to test for the BRAF gene, they could certainly send another sample for the C-Kit and I could easily have blood drawn for the HLA A2 antigen.  As a patient, I wonder if I can TELL them what I want done as opposed to asking?

Definitely TELL instead of ask.  I made many many mistakes in Will's treatment and that was foremost.  I waited too many times instead of being pro-active.  It wasn't until I found this board that I got some real courage.

Hi!

I agree with the others that IL-2 is a more severe treatment. Although there's no guarantee that it will work, if it does work, it works well. Dacarbazine, not so much. Melanoma is quite chemo-resistant. I also agree with Val in Mtl about going to the US for IL-2. Why do that when IL-2 is available in Canada? It will be covered by Medicare, and your travel will be covered if you have to leave Winnipeg for treatment. I've done clinical trials in Pennsylvania when I was Stage III, and it can be VERY expensive.

I had an ILP in Halifax in 2007, and was NED for almost a year, but then recurred in my leg, and eventually progressed to Stage IV in early 2009. If you're Stage IV already, an ILP is not an option, as you would need something more systemic. ILP would just treat your leg, lay you out for several months, allowing the systemic cells to have a field day on your body. So I am surprised that your Dr has tossed that in as a consideration at this point. It's like closing the barn door after the horses are gone..

It's not that the 1 yr of INF makes you ineligible for Ipi. INF is "standard" for Stage III, but in order to do Ipi, you have to have tried and failed a standard of care treatment for Stage IV, like Dacarbazine, Temodar, or IL-2.

Whatever you do, don't take the "wait and see" approach. Melanoma is so unpredictable, you don't want to take a chance with it. No one can say whether it will progress, nor how fast it would progress. Everyone is different. I've been told that statistically I shouldn't still be alive, given the type of mel that I have, but to look at me, you'd never know I had a thing wrong with me. I was given 3 yrs to live, and that was 5 years ago. Go figure!

Someone suggested seeing Dr Michael Smylie at the Cross Cancer Institute in Edmonton for a second opinion. That's not a bad idea if you can swing it.

Also, may I suggest checking out the Melanoma Network of Canada. http://melanomanetwork.ca  It's a new site, and steadily growing, but it's geared to Canadian mel patients, since the mel scene in Canada is somewhat helter-skelter (in my opinion). You may find it helpful in finding Canadian mel specialists in different areas.

Good luck with your decision. Let us know how it goes.

Hugs

Sharyn, Stage IV 

WLE, SNB, ILP, LND, PV-10, Uterine mets (Hysterectomy), GM-CSF, WBR, RT, Temodar, B-RAF negative, SRS (Novalis) to brain, Breast mets (Mastectomy), currently on Ipilimumab compassionate use trial
Mets to brain, lung and sub-qs. Craniotomy.

Hi, Me again!

I just read Lori's post about genetic profiling. I had the BRAF test done and was negative, so I had a more expansive genetic profiling done through UCSF. I have all the info and forms for you and your Dr to fill out for submission. Just email me and I'll send it all as an attachment. The prices are steep, but if your doctor can get it approved through medicare, they may cover the cost. I was fully prepared to pay a few thousand dollars US, but I never did recieve a bill, so I can only assume my Dr got it covered by medicare.

Anyway, I was also C-KIT negative, but they did find a mutation in the NRAS gene path. However, there's no treatment yet for that mutation -- none that I know of anyway.

Email me if you want the info.

Hugs

Sharyn, Stage IV

WLE, SNB, ILP, LND, PV-10, Uterine mets (Hysterectomy), GM-CSF, WBR, RT, Temodar, B-RAF negative, SRS (Novalis) to brain, Breast mets (Mastectomy), currently on Ipilimumab compassionate use trial
Mets to brain, lung and sub-qs. Craniotomy.

Thanks, Sharyn,

 

Yes, I would like to email you re:  the gene testing forms.  Being new to the site, do I get your email address off of your profile page?  You have really gone through it all - and then some!  I did go on the Canadian Mel site and noticed that you are or were being treated with ipi.  How is that going?  It seems to be the treatment everyone wants. I wonder what makes it so different, and so promising?

 

Take care.

Since they changed the format on the board, I don't know anymore how to just click on a name and get an email address. So I'll give it to you here. It's sharynpower@nl.rogers.com

Sharyn

WLE, SNB, ILP, LND, PV-10, Uterine mets (Hysterectomy), GM-CSF, WBR, RT, Temodar, B-RAF negative, SRS (Novalis) to brain, Breast mets (Mastectomy), currently on Ipilimumab compassionate use trial
Mets to brain, lung and sub-qs. Craniotomy.

I haven't read all the replies so much of this may be repeat info!

Many trials require you to fail at standard treatments, which for melanoma include decarbazine and IL2, even though the decarbazine has virtually zero support for it working.  Crazy, huh?

Many people do the decarb. just in case it can help and because it is easier / shorter time than the IL2 and then once they "fail" at that treatment they can then move on to other trial options.

I had d. in a cocktail of several chemos & IL2 & interferon (called biochem).  It slowed things down some and I do know others who have had good responses to it.  Varies greatly from patient to patient.  It's horrible - I would never do it again.  It almost killed me.  But I bet the d. alone would not be too big a deal.  I have done temador which is very similar, in fact t. was developed from d., and the temador was nothing.  No side effects for me on that one.

I haven't done high dose IL2.  I have done intrathecal IL2 which is a lower dose injected directly into the part of the brain that produces the spinal fluid.  It's not fun.  But it's doable.  It's typically only done for leptomeningial disease / spinal fluid  / spinal column mets.  And I think only Dr. Papadopolous at MD Anderson in Houston does it.  Sounds like your brain / central nervous system is clear.  That's great!  And it keeps you eligible for many trial options that I am excluded from.

I had a great response to targeted therapy.  I am BRAF mutation positive so I did a BRAF inhibitor for 8 months in 2009 / 2010 till it came back in my brain, thus booting me off the drug.  But I would absolutely do one again as it had zero side effects for me and I could literally feel my disease in the lymph nodes & subq tissues shrinking within 2 days.

Many people have had success with IL2.  It's a hard course.  Usually it's 2 weeks inpatient, followed by a few weeks to regain your strength and then repeat.  I had a hard time on biochem and I think IL2 way be even worse.  I definitely needed someone with me most of the time, but some have been able to do it alone with just the nursing help at the hospital.  My problem was that I was so out of it I often couldn't remember or comprehend instructions / info from docs/ nurses, so things would get lost in the shuffle unless I had a friend or family member with me.

I am sorry you're facing these hard decisions.  There are no right or wrong choices.  Each person responds so differently that there is no way to really know how bad a treatment will be or how good a response they may see.  So pick what seems best for you in terms of your comfort level / travel / finances / peace of mind / physical demands.  And then don't 2nd guess youself or regret any decisions.  No way to ever go back and know what could have been.

I wish you the best of luck in your fight.  Stay strong.  It's a Beast.  We call it that for a reason.  But there are many of us who have been fighting & winning for years.  And I for one have no intention of stopping!  So hang in there and know you are not alone!

Love,

Amy

Stage 3 - 2003, Stage 4 - 2009

just started ipi comp. use this past week

I continue to praise God in this storm, counting my blessings & enjoying my "bonus time!"

Thanks for your imput, Amy.  I am really beginning to understand how knowledge IS power.  Everyone on the forum has been so helpful.  I am glad I finally made the decision to stop lurking and register!  Now I have lots of questions to take to my Oncologist and I feel calmer and more confident already.  I wish you success with the ipi treatment you just started. 

If you are otherwise healthy, IL-2 will give you the best bet for a prolonged remission.  I had only 1 lung nodule removed by VATS and a small muscle tumor in my chest wall.  I chose IL-2 because it is a short course of therapy with the best chance for a prolonged remission if I was a complete responder.  You currently don't get that with any other treatment.  DTIC has similar response rates to IL-2 but doesn't have as good a track record of prolonged survival if you do become NED.

I did 23 bags if IL-2 and am now NED.  It was tough but doable and after 1 month (one week on, rest 10 days, one week on, recovery) I was back to normal.  My scans only 6 weeks later showed I was a complete responder.  Like you I had minimal disease which was creepy crawly.  I was 2A ,7 1/2 years prior before become stage IV.  I honestly think if you are in good hands you need to go for it.  Yes you get sick but it is over quickly and the side effects are practically all gone within 10 days.  Other therapies you take for a prolonged period of time, or stay on indefinately.

IMHO.  The side effects are treatable and I slept through the worst of it.  Jane from Maine has a great checklist of things to bring.  Do have someone stay in your room throughout treatment.  You will get sick, it's only a matter of what organs, when, and how bad.  It is worth doing.  I also like the idea of charging up my immune system to beat mel versus having to take a chemo like drug.  Again, doing IL-2 now with minimal disease and a healthier immune system will give you the best chance of becoming NED.  Personally, as scary as it is, it has gotten better.  Perhaps more would respond if they didn't wait until they had heavy burdens of disease.

IMHO - once you make your mind up, go for it and don't look back.

Best of luck,

Kim - NED since July, 2010

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.

Hi Kim,

 

Thanks for the first-hand account.  IL-2 seems like the best choice for me.   I haven't had a good night's sleep for a few years now, so if I can sleep through any of it (I know there are no guarantees of that) it would be a bonus!  Some people have mentioned that the treatment has given them insomnia.  I hope that won't be the case with me.

By the way, I love your mottos! 

If you are otherwise healthy, IL-2 will give you the best bet for a prolonged remission.  I had only 1 lung nodule removed by VATS and a small muscle tumor in my chest wall.  I chose IL-2 because it is a short course of therapy with the best chance for a prolonged remission if I was a complete responder.  You currently don't get that with any other treatment.  DTIC has similar response rates to IL-2 but doesn't have as good a track record of prolonged survival if you do become NED.

I did 23 bags if IL-2 and am now NED.  It was tough but doable and after 1 month (one week on, rest 10 days, one week on, recovery) I was back to normal.  My scans only 6 weeks later showed I was a complete responder.  Like you I had minimal disease which was creepy crawly.  I was 2A ,7 1/2 years prior before become stage IV.  I honestly think if you are in good hands you need to go for it.  Yes you get sick but it is over quickly and the side effects are practically all gone within 10 days.  Other therapies you take for a prolonged period of time, or stay on indefinately.

IMHO.  The side effects are treatable and I slept through the worst of it.  Jane from Maine has a great checklist of things to bring.  Do have someone stay in your room throughout treatment.  You will get sick, it's only a matter of what organs, when, and how bad.  It is worth doing.  I also like the idea of charging up my immune system to beat mel versus having to take a chemo like drug.  Again, doing IL-2 now with minimal disease and a healthier immune system will give you the best chance of becoming NED.  Personally, as scary as it is, it has gotten better.  Perhaps more would respond if they didn't wait until they had heavy burdens of disease.

IMHO - once you make your mind up, go for it and don't look back.

Best of luck,

Kim - NED since July, 2010

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.

Hi I am a stage IV survivor and I had a radical neck dissection to get the mel out of the lymph nodes, and at the same time I had a lung met. This was in 2006. I underwent 18 months of Biochemotherapy with IL-2. Very tough to get through, but so far I am a success story with this treatment. I am 4 years NED. Feel free to look at my profile.

Please keep us posted and if you have any more questions I would be more than happy to answer,

Suzanne

Every day I wake up is a gift!

Thanks, Suzanne.  I didn't realize that IL-2 treatments could last that long!  I know my Oncologist mentioned 1 week treatment, one week out, then another week of treatment then a rest for approximately 7 weeks.  If, during that time, scans show no change, they would stop treatment.  It seems like treatments vary depending on where you live.  I am glad you are 4 years NED. 

Jane

I know it's really unbelieveable that the regimen here is so long, I had my treatment in San Francisco at California Pacific Medical Center and this was my doctor's treatment at that time  (2006). I do know someone that is doing the exact same protocol as myself and she had 6 lung mets and after 4 hospitalizations, 5 tumors have shrunk and there is only one left. I told her at this rate that is fantastic news, but I still think she has 14 more treatment cycles to go, unless my doc has changed it up.

Thank you for your kind words, it is really great to be NED so far!

Suzanne

Every day I wake up is a gift!

I have had the IL2 treatment back in 2005. The treatment was given in the ICU at St.Johns Hospital in Saint Louis,Mo. I was in ICU for 5 days, then went home for one week and then back in ICU for 5 more days. I did this twice. But I'm happy to say that I'm feeling great. That was 6 years ago. I would be happy to answer any of your questions.

I was diagnosed with stage 3 in 2003 and was put on the interferon right away.  long slow process but was cancer free for almost a year.  Melanoma came back to most vital organs in 2005 had a round of dcit then went to edmonton alberta to have il2.  treatment was tough tough, but had great results.  lung tumor was 10 cm and after first week of treatment it shrunk to 5 cm....all tumors disappeared after 4 rounds.  Reoccurence in 2007 tumor in digestive track surgically removed. Then went on compassionate Ippy.  That was 2 years ago and today am tumor and treatment free....

Hi stillstanding,

 

Thanks for your response.  Right now I am waiting to hear from Manitoba Health regarding my date to start IL-2 treatments at the Hillman Cancer Center in Pittsburgh.  My Oncologist contacted Dr. Smiley in Edmonton, but  I guess it was impossible to get me treatments there (waiting lists).  When you say 4 rounds does that mean 4 individual weeks of treatments with a week off between each?  I think I am going to be having one week of treatment, one week off, then another week.  After that I fly back to Manitoba where I have scans approximately 7 weeks later to see if there has been any progress.  I am not sure what happens after that point.  When did you first know that the treatment was working?  Did you feel different or was it the result of scans? 

Hi ValJane,

  Not sure if I am following your story correctly.....I have missed the part of why you are stage 4 if the cancer is still only in your left leg.....and if this is true then why not an ILP or ILI? My cancer was in my sentinal node, in my groin and my primary was lower calf...making me stage 3a. I did do the ILP at Mass General in 9/09 and had a reoccurrence about 10 months later (so in the 15% roughly, that melphalen, the chemo, through the ILP DIDNT work). I am now considering whether I may be a candidate for an ILI at MD Anderson IF the ipi trial I am on fails. I am doing Ipi and am stage 3a by the way....have NOT done Il2 or biochemo yet.

Please write me if you want more info on the ILP.

Best of luck!! Keep coming back the this board, it is wonderful support and information!

Vermont_Donna, stage 3a, currently doing IPI trial at DHMC, Lebanon NH

donna0912@hotmail.com

I went thru 10 days of radiation and the last 5 days I took temodar ( newer sister to DTIC- with less side effects). I then took Temodar July 09 til March 2010 ( however was told it stopped working in Jan or Feb)-  had surgery (thoracotomy) and had melanoma (6.8 cent) removed from  a lymph node by my heart. Went to Mayo Clinic and was surgically made NED March 26, 2010. Currently on vaccine trial at Moffitt using peptides and MDX1106...NED going on 9 months!

Good luck with your treatments!

Advocate for your own treatment.. Stage 4 Melanoma NED Surgery,Radiation, Temodar 300Mg July 2009-March 2010, then Thorocotomy...now "Phase I Study of Anti-PD-1 Human Monoclonal Antibody MDX-1106 and Vaccine Therapy"

Given your options, I would side with those who recommend IL-2.  It certainly worked for me.  I was Stage 4 in 1991, and had high-dose IL-2 at NIH in spring-summer of 1992.  I had a complete response and continue to be NED nearly 20 years later.  Yes, the side effects were significant and wide-ranging.  However, soon after each round, I would start feeling better fairly soon.  I would certainly do it again if I were in the same situation.  Best wishes to you.  Rick

Thanks, Rick.  Your post really gives me hope and makes my upcoming 'IL-2 adventure' seem so worth while.  I will post again when I return from Pittsburgh.