Looking for feedback and support

Kellie_T · December 2010

Over the recent Labor Day weekend I was in the shower and noticed a small bump to the left side of my groin. It didn’t hurt so I wasn’t overly concerned. I made an appointment with my Primary (same doctor) the Tuesday after the holiday. He felt it and told me he was concerned it may be a Melanoma reoccurrence and gave me a referral to a general surgeon to have it biopsied. The surgeon asked me when my last PET scan had been completed. I told him no one had ever requested a PET as part of my follow-up. Regardless, he requested a PET scan on September 21, 2010 and on September 23, 2010 I had two groin nodes biopsied. Up to this point I still wasn’t concerned. Unfortunately the PET scan revealed several hot nodes in my left groin/pelvic area. The biopsies confirmed it to be Melanoma. The surgical oncologist stated I was Stage IIIb or c. I previously had a 1.2mm mole removed 4 1/2 years ago which was confirmed as Melanoma then subsequently had a WLE and sentinel node removed. Both the margins and node came back clear.
On October 19, 2010 I underwent a radical groin lymph node dissection. Of the 18 lymph nodes removed, half had Melanoma. My next step will be 6 weeks of localized radiation around mid-December. I'm back at the gym walking 3 miles and doing light upper body weights. I feel fortunate that I went to the gym regularly and otherwise am in good health. I healed pretty quickly from the surgery and am able to do most things. The Medical Oncologist at Moffitt Cancer Center in Tampa has briefly discussed Interferon (and had negative comments about it) as well as a clinical trial. I’m trying to find out as much info as I can regarding both. I haven’t read many positive writings on Interferon and the side effects. Will I be able to work while taking the year-long treatment? Is participation in a Clinical Trial to risky? I’m young with a LOT of life to live. I’m taking each day as it comes and am grateful at this point to live life in what we call “new normal” and am fortunate to have very supportive friends and family.

mh1229 · December 2010

I am stage 3a. I had to
I am stage 3a. I had to make the same decision as you. Interferon or a trial. Interferon didn't amaze me. I went with a adjuvant ipilimumab trial. I could be getting a placebo but I am confident in the follow up care and the things I am doing to help fend off a recurrance.
I am young and was notwilling to spend my time sick with side effects. The chances of it helping were not enough for me. Some studies show that it simply puts off a recurrance for the year you are on it.
It is tough because you want to do as much as possible but there really isn't much out there! Just do your homework and something will stand out and say "pick me"

Kellie_T · December 2010

mh1229 said:
I am stage 3a. I had to
I am stage 3a. I had to make the same decision as you. Interferon or a trial. Interferon didn't amaze me. I went with a adjuvant ipilimumab trial. I could be getting a placebo but I am confident in the follow up care and the things I am doing to help fend off a recurrance.
I am young and was notwilling to spend my time sick with side effects. The chances of it helping were not enough for me. Some studies show that it simply puts off a recurrance for the year you are on it.
It is tough because you want to do as much as possible but there really isn't much out there! Just do your homework and something will stand out and say "pick me"

Thanks for the feedback.
Thanks for the feedback. This is a tough decision to make. I'm a little uneasy with getting into a control group that is given a placebo. It seems that I may as well choose the "wait and see" option if I go with a trial with a placebo.

washoegal · December 2010

Decisions....
Sorry for your situation. I am stage 3a. My Onc was also not impressed by interferon results. I chose wait and watch, I was only given that or interferon as choices. Had Ipi trial been one of my choices, I would had jumped on that. I am blown away that with a clear SNB, you had all all that in you LN.

If you are considering a Phase 3 clinical trial, risk is much lower. You'll get the best of care and regular testing. Just make sure to completely understand exactly what costs are covered. I am a firm believer that much of the care you get is dictated by your attitude, and girl you got a great one! People will bend over backwards to help you. If you can get Ipi or another trial that your Onc likes, do it. There aren't a lot of options for us stage 3ers.

Also, if you haven't done so already, talk to surgeon about getting fitted for a stocking for your leg to prevent lymphedema. I use a sleeve on my arm only when I talk long airline flights, or occasional y when the weather bothers me.

Good luck,
Mary

mh1229 · December 2010

Kellie_T said:
Thanks for the feedback.
Thanks for the feedback. This is a tough decision to make. I'm a little uneasy with getting into a control group that is given a placebo. It seems that I may as well choose the "wait and see" option if I go with a trial with a placebo.

I debated between watch and
I debated between watch and wait and ipi trial. My hang up was having to wean a nursing baby to do the trial and then what if I got the placebo! But you have to stop the what ifs... they will get you no where. The way I see it... even if I am getting a placebo (which I am almost positive I am) then at least the follow up care I am getting is excellent. I think any doctor who is signed on to a clinical trial is up to date on treatments/studies and is willing ot think outside the box. Plus there is extra attention to your bloodwork and you are kept on a schedule without fail when it comes to scans and workups.
But yes, you have to be comfortable with the watch and wait option to do a trial with a placebo arm. If you decide to do the trial you can message me with any questions. I go for my 24 week infusion and scans next week. It is an interesting ride the first several weeks!

Kellie_T · December 2010

mh1229 said:
I debated between watch and
I debated between watch and wait and ipi trial. My hang up was having to wean a nursing baby to do the trial and then what if I got the placebo! But you have to stop the what ifs... they will get you no where. The way I see it... even if I am getting a placebo (which I am almost positive I am) then at least the follow up care I am getting is excellent. I think any doctor who is signed on to a clinical trial is up to date on treatments/studies and is willing ot think outside the box. Plus there is extra attention to your bloodwork and you are kept on a schedule without fail when it comes to scans and workups.
But yes, you have to be comfortable with the watch and wait option to do a trial with a placebo arm. If you decide to do the trial you can message me with any questions. I go for my 24 week infusion and scans next week. It is an interesting ride the first several weeks!

Trials
I've been looking up what is offered out there (Cancer.gov). The trial Moffitt (which is where I'm being treated) offered is in Phase I and that's if I'm a genetic match for it. Not too comfortable about a Phase I trial. It's hard to tell what trial you can qualify for based on the laundry list of qualifications. How/where did you get offered your trial?

Kellie_T · December 2010

washoegal said:
Decisions....
Sorry for your situation. I am stage 3a. My Onc was also not impressed by interferon results. I chose wait and watch, I was only given that or interferon as choices. Had Ipi trial been one of my choices, I would had jumped on that. I am blown away that with a clear SNB, you had all all that in you LN.

If you are considering a Phase 3 clinical trial, risk is much lower. You'll get the best of care and regular testing. Just make sure to completely understand exactly what costs are covered. I am a firm believer that much of the care you get is dictated by your attitude, and girl you got a great one! People will bend over backwards to help you. If you can get Ipi or another trial that your Onc likes, do it. There aren't a lot of options for us stage 3ers.

Also, if you haven't done so already, talk to surgeon about getting fitted for a stocking for your leg to prevent lymphedema. I use a sleeve on my arm only when I talk long airline flights, or occasional y when the weather bothers me.

Good luck,
Mary

Trials
Thanks so much for your reply. Other than this site I have no one to discuss this with that truly understands. I have a very supportive family but it's kind of like a fish bowl and I'm the only fish on the inside. I've been attempting to find a Phase 3 but you're right, there isn't much if anything out there on Cancer.gov. Don't know where else to look. Thanks for the heads up on the stocking. I'm actually waiting for a lymphadema specialist to finalize my referral authorization to be seen. I have some slight swelling in my thigh but nothing major. I also start radiation therapy this week. I know what you mean regarding the SNB 4 1/2 years ago. According to my Medical Oncologist, 90% of people with clear margins and SNB are "cured". I fell into the other 10% where the microscopic cells go crazy. I agree about keeping a positive attitude. My husband and kids constantly tell me I'm the strongest person they know. I have weak moments but that's all they are...moments. Being sad or sorry doesn't change anything. This isn't the families first cancer rodeo. My son was diagnosed with Burkitt's Lymphoma (form of Non-Hodgkin's) at age 7. He was going into Stage IV when diagnosed. He went through 4 months of mostly inpatient chemo in 1994 and in remission that same year. He's now 23, healthy, a college graduate and living on his own. Miracles do happen. I see mine just about daily.

washoegal · December 2010

Kellie_T said:
Trials
Thanks so much for your reply. Other than this site I have no one to discuss this with that truly understands. I have a very supportive family but it's kind of like a fish bowl and I'm the only fish on the inside. I've been attempting to find a Phase 3 but you're right, there isn't much if anything out there on Cancer.gov. Don't know where else to look. Thanks for the heads up on the stocking. I'm actually waiting for a lymphadema specialist to finalize my referral authorization to be seen. I have some slight swelling in my thigh but nothing major. I also start radiation therapy this week. I know what you mean regarding the SNB 4 1/2 years ago. According to my Medical Oncologist, 90% of people with clear margins and SNB are "cured". I fell into the other 10% where the microscopic cells go crazy. I agree about keeping a positive attitude. My husband and kids constantly tell me I'm the strongest person they know. I have weak moments but that's all they are...moments. Being sad or sorry doesn't change anything. This isn't the families first cancer rodeo. My son was diagnosed with Burkitt's Lymphoma (form of Non-Hodgkin's) at age 7. He was going into Stage IV when diagnosed. He went through 4 months of mostly inpatient chemo in 1994 and in remission that same year. He's now 23, healthy, a college graduate and living on his own. Miracles do happen. I see mine just about daily.

Interferon
Kellie.

My only other thought on Interferon is that many of the trials require you to have tried one other approach and failed before going into their trial. What about talking to you Dr about Leukine, I think is available for Stage 3 and more effective.

Also try this link:
http://clinicaltrials.gov/ct2/show/NCT00636168

mh1229 · December 2010

washoegal said:
Interferon
Kellie.

My only other thought on Interferon is that many of the trials require you to have tried one other approach and failed before going into their trial. What about talking to you Dr about Leukine, I think is available for Stage 3 and more effective.

Also try this link:
http://clinicaltrials.gov/ct2/show/NCT00636168

Stage 3 trials will want you
Stage 3 trials will want you to have done nothing else before their trial... otherwise their results are not clean. To get compassionate use of a trial drug you have to fail a first line of treatment for stage 4.
I had to shop around for the ipi trial. If you know what you want then call around and see who is offering it. Most doctors/hospitals list their trials on their websites.
A study came out a few months ago on Leukine not being effective for stage 3. I looked into it heavily and right at decision time the study was published.
Your choices are slim! It would be easy if one of them were a slam dunk. I'm sorry. I hope it comes to you soon.

Mishanne · December 2010

I chose wait and see... my
I chose wait and see... my first 3 month check up is tomorrow so wish me luck! I was diagnosed this summer- stage 3b, only 1 positive lymph node with rare nests of microscopic cells but my primary was 13 mm thick and ulcerated which means I'm at high risk for recurrence. I opted out of further surgery to remove the remaining lymph nodes in the basin and the 1 month interferon trial. I am young too! Only 23 and trying to finish a masters degree- weighing the side effects with the possible benefits I decided I wanted enjoy life as much as possible for as long as I can and if/when the cancer shows up again I will try further treatment. Meanwhile I am trying to eat healthy and avoid too much stress... easier said than done

washoegal · December 2010

mh1229 said:
Stage 3 trials will want you
Stage 3 trials will want you to have done nothing else before their trial... otherwise their results are not clean. To get compassionate use of a trial drug you have to fail a first line of treatment for stage 4.
I had to shop around for the ipi trial. If you know what you want then call around and see who is offering it. Most doctors/hospitals list their trials on their websites.
A study came out a few months ago on Leukine not being effective for stage 3. I looked into it heavily and right at decision time the study was published.
Your choices are slim! It would be easy if one of them were a slam dunk. I'm sorry. I hope it comes to you soon.

Leukine
This is one study I was not aware of. I know Leukine is not a slam dunk cure but it is better than Interferon and seems to have a lot less side effects. Can you by any chance find a link to this study?

Thanks,
Mary

Kellie_T · December 2010

Mishanne said:
I chose wait and see... my
I chose wait and see... my first 3 month check up is tomorrow so wish me luck! I was diagnosed this summer- stage 3b, only 1 positive lymph node with rare nests of microscopic cells but my primary was 13 mm thick and ulcerated which means I'm at high risk for recurrence. I opted out of further surgery to remove the remaining lymph nodes in the basin and the 1 month interferon trial. I am young too! Only 23 and trying to finish a masters degree- weighing the side effects with the possible benefits I decided I wanted enjoy life as much as possible for as long as I can and if/when the cancer shows up again I will try further treatment. Meanwhile I am trying to eat healthy and avoid too much stress... easier said than done

LUCK LUCK LUCK
Wishing you the best of outcomes. You're right, 23 is young. I also agree about the avoiding stress but not sure that's an option considering you're working on your Master's degree. Please keep posting your progess.

Thanks

Kellie_T · December 2010

mh1229 said:
Stage 3 trials will want you
Stage 3 trials will want you to have done nothing else before their trial... otherwise their results are not clean. To get compassionate use of a trial drug you have to fail a first line of treatment for stage 4.
I had to shop around for the ipi trial. If you know what you want then call around and see who is offering it. Most doctors/hospitals list their trials on their websites.
A study came out a few months ago on Leukine not being effective for stage 3. I looked into it heavily and right at decision time the study was published.
Your choices are slim! It would be easy if one of them were a slam dunk. I'm sorry. I hope it comes to you soon.

Trials
Thanks so much for your reply. Definitely doing A LOT of research. Started radiation today. 29 more treatments to go!

Mishanne · December 2010

Kellie_T said:
LUCK LUCK LUCK
Wishing you the best of outcomes. You're right, 23 is young. I also agree about the avoiding stress but not sure that's an option considering you're working on your Master's degree. Please keep posting your progess.

Thanks

Thanks- well the doctor
Thanks- well the doctor didn't feel anything bad so Happy Holidays! I am so glad I didn't have to be the bearer of bad news to my family and friends for Christmas. I'm also getting ultrasounds to keep a closer eye on my lymph nodes since my risk for recurrence is so high.

mh1229 · December 2010

washoegal said:
Leukine
This is one study I was not aware of. I know Leukine is not a slam dunk cure but it is better than Interferon and seems to have a lot less side effects. Can you by any chance find a link to this study?

Thanks,
Mary

Mary,
Here is a link to the
Mary,
Here is a link to the study.. its not the full study. Just the abstract.
http://abstract.asco.org/AbstView_74_49374.html

In a nutshell leukine vs placebo had a 3 month difference in progression free survival. Not statistacall significant enough to be effective.

LynnLuc · December 2010

clinical trials risky?
I am stage 4 Melanoma NED now for 8 months and currently in a trial at Moffitt.
If people with melanoma don't do the trials, there is really no hope...melanoma kills..I don't know about stage 3 and if you have more options... I was offered leukine injections by Mayo Clinic in Rochester MN and later told I would not benefit because mine was in a lymph node...they said it was found Leukine didn't improve life expectancy in such cliets...Moffitt has a clinical vaccine trial for stage 3 melanoma if its unresectable. It's the same trial I am in except mine is for stage 4 NED patients. I needed to have a specific HLA and certain antigens...I was joking with my oncologist and reminded him that he said I might lose a lot of weight on this trial...which didn't happen ( no serious effects whatsoever) and he said half jokingly since I was whining "I can put you on interferon and you will lose a lot of weight!"...he then said both interferon and IL 2 were both really hard to do and he said he wouldn't put me on them...so it sounds kind of rough...perhaps some people can work but from what I have read I think it would be difficult.

beautylee · January 2011

LynnLuc said:
clinical trials risky?
I am stage 4 Melanoma NED now for 8 months and currently in a trial at Moffitt.
If people with melanoma don't do the trials, there is really no hope...melanoma kills..I don't know about stage 3 and if you have more options... I was offered leukine injections by Mayo Clinic in Rochester MN and later told I would not benefit because mine was in a lymph node...they said it was found Leukine didn't improve life expectancy in such cliets...Moffitt has a clinical vaccine trial for stage 3 melanoma if its unresectable. It's the same trial I am in except mine is for stage 4 NED patients. I needed to have a specific HLA and certain antigens...I was joking with my oncologist and reminded him that he said I might lose a lot of weight on this trial...which didn't happen ( no serious effects whatsoever) and he said half jokingly since I was whining "I can put you on interferon and you will lose a lot of weight!"...he then said both interferon and IL 2 were both really hard to do and he said he wouldn't put me on them...so it sounds kind of rough...perhaps some people can work but from what I have read I think it would be difficult.

Melanoma
So sorry to hear of your dilemmas people. My mum was diagnosed with Melanoma 10 years ago, had two ops to remove it, but I guess she was lucky, it hadnt spread to lymphs. She has to go back every year because of the type of melanoma she had, apparently very aggressive. I can only hope you all fight and survive it. I myself have had scc removed from bottom lip, in a lip reconstruction op and Im happy with the outcome.

I think we all need to educate people that sunbathing, being in the sun is NOT a good thing, not now, if this cancer can cause me damage from back in the 60's 70's what the hell is it doing to people now? Sunbathing is like smoking, it should be banned. You dont have to go into the sun for Vitamin D btw, you can take tablets for that. If you want to boost your immune system, try olive leaf extract daily diluted in water. Brilliant detox, try to avoid docs medicines as much as you can, read and try natural kinds of medication thats not as harmful to the body, in the end if the medications contribute to your death, all they will say is the cancer killed you. Be aware!

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