Below is an article written by melanoma specialist, Eric Whitman, MD. Currently, he is the Director of the Atlantic Melanoma Center and also the Medical Director of Atlantic Health’s Office of Grants and Research, which coordinates all clinical research throughout the Atlantic Health system. For quite some time, I have mulled over this little thing digging in the back of my mind. When Brian was first diagnosed with a recurrence back in April 05, it was initially recommended that he have isolated limb perfusion. These notes are from the World Melanoma Congress in Vienna. His writing is in blue, and my comments are in red. I guess I could say maybe I can put that little "what if" to rest.
Isolated limb perfusion (ILP) and isolated limb infusion (ILI) for melanoma were both discussed, by Dr. Eggermont from the Netherlands and Dr. Thompson from Australia, respectively. The major difference between these two techniques is that ILP requires major surgery and can be repeated one additional time but that ILI just uses catheters placed by interventional radiology, and therefore could in theory be repeated almost indefinitely as long as the melanoma was responding.
To back up, these techniques are intended for locally advanced melanoma in an arm or leg, where additional surgery would either not be indicated or may lead to an amputation. (Brian always wished he would have had his leg amputated, so that is my other "what if".) Only a small minority of melanoma patients would ever be eligible for such a procedure. (The reason why Brian did not do this, although he probably could have if we would have pursued it.) In this procedure, similar to our protocol for the liver, high doses of chemotherapy, typically melphalan but also Actinomycin D or Tumor Necrosis Factor depending on the medical center and country, are given directly into the affected limb, isolating its blood supply and thus limiting the exposure of the rest of the body.
In any event, the response rates to these therapies have not changed in the past 10+ years. ILP works slightly better than ILI. Most of the patients unfortunately recur and die after therapy. (He died anyway without the ILP, so now I am back to the "what if".)
ILI probably has more of a future. We just need better drugs for both regional and systemic drug therapy for melanoma. (We need more money for melanoma research.)
He also had a lot to say about IL-2. The percentages are not good. But then today, there was a role call on my support group site for all NED (no evidence of disease). Check it out for stage 4'ers...also including stage 3'ers since Brian was stage 3 in April 05 and advanced to stage 4 only 15 mo. later in July 06, then only lived with stage 4 for 20 months. This is just a quick sample, considering many of those living with NED only check in on this site occasionally because they are out just living life. I also don't want to downplay the importance of being NED at all stages, considering Brian was NED at stage 2, but that only lasted for 3yrs/8mo. before advancing to stage 3. There are so many out there living with the beast.
STAGE 4 NED!
16 years (Complete response to IL-2 at NIH in 1992.)
15 yrs. (had been Stage 3 for 10 1/2 yrs before recurrence) - has lived w/ the beast for 26 yrs!
13 yrs.
12 yrs. 2 mos.
12 yrs. 4 mos.
9 years
6 years
6 yrs. (diagnosed at stage 4)
5 1/2 years
5 yrs. 3 mos.
3 1/2 years (dealing with the beast for 20 years)
3 1/2 years (stage 3 for 1 year prior)
2 yrs. 11 mos.
2 yrs. 2 mos.
1 yr. 2 mos.
13 months
1 yrs. 1 mos.
1 year
STAGE 3 NED!
12 yrs. 6 mo.
11 years
9 yrs. 5 mos.
8 yrs.
7 yrs. 8 mo.
7 yrs. 8 mos.
7 yrs. 3 mos.
7 yrs. 2 mos.
7 yrs. 2 mos.
7 yrs.
6 yrs. 10 mo. 5 days
6 yrs. 1 mo.
6 yrs.
6 years.
5 yrs. 10 mos.
5 yrs. 8 mos.
5yrs. 2 mos.
4 yrs. 8 mos.
4 1/2 years
4 yrs. 2 mos.
4 yrs.
3 1/2 years
3 yrs. 10 mos.
3 1/2 years
3 yrs. 5 mos.
3 yrs. 3 mos.
3 years
3 yrs.
3 yrs.
3 yrs.
3 yrs. (no treatment, just observation)
2 yrs. 9 mos.
2 yrs. 6 mos.
2 yrs.
1 yrs. 11 mos.
1 yr. 8 mos.
1 yr. 7 mos. 21 days
18 mos.
1 yr. 6 mos.
15 mos.
14 mos. (this is a four year old)
1 yr. 2 mos.
13 mos.
1 year
1 yr.
1 year
Sigh. I am so very thankful for each of these melanoma warriors and the fact that they are beating melanoma. I am saddened to think that Brian, that we, did not receive that blessing. The reason for that, I will go to my own grave always wondering. It did make me think of another line in Grey's when Izzy's oncologist was working on Allison after she collapsed. The other doctor said something like...so much for IL-2...and she responded that when Allison came to her, she had 3 months to live and she has kept her alive for 2 years and that all they could do was try to fight it. What a blessing that so many are able to win this fight! I am very thankful for the fact that Brian had 7 years and 8 months from his original diagnosis (so many don't get that much time)...in that time he had a profound impact on my life, on my heart. We fell madly in love, we created a family together, he loved the girls, and loved his students and friends at school, and he blessed my life with Tye. So I am very thankful that whatever treatments Brian had, while they did not eradicate the beast, they gave us the gift of time.
I could totally contradict myself right now by going off on why we didn't get more time...like 16 years NED! Good God, the kids would have all been out of high school by then and, and, and...I better stop and just count my blessings for tonight.
I pray that you all heed my warnings concerning sunscreen and checking your body. God forbid, if you end up with melanoma, hopefully you can find it early and give yourself great odds for beating it. That goes for all cancers...do everything you can not to ignore signs that might be trying to tell you something. People out there love you and want to be with you...
Here I go again, what if Brian had his original mole checked instead of letting it bleed for 18 months or longer...and the answer to that, I will never know...
Back to Izzy, I seriously do not know what the odds are for IL-2 and its affect on the brain. Having brain mets is exactly what Dr. McDreamy said...that tumor will kill her. I am actually surprised at how much the other doctors were convinced that this immunotherapy would actually kill the cancer in her brain.
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