Sunday, September 19, 2010

More Results

Sorry it has taken me so long to post the results from my latest visit with my docs.  I needed some time to process the information.

I met with doc and he confirmed that the tumor in my kidney was melanoma. We reviewed the results from my CT scan and he explained that I have 3 tumors on my lungs.  A 7mm on my lower right lobe, a 8mm on my lower left lobe and a 2mm on my left lingula (small area of the left lung). He is not recommending surgery as he believes they are to small for a surgeon to find and since this is the second time a met has come to my lung (initial in 2008).  He is recommending a chemo treatment.  His first recommendation is a treatment called High Dose IL-2.  It is nasty, but in the words of my doc, my best bet for a cure. Yes, he did use that word which I haven't heard him utter in the 4 years I have been working with him.  In his experience this treatment has worked with melanoma patients with mets in their lungs.  Although he believes this is my best option, I am scared of this treatment.  It requires a 5 day stay in the hospital a 9 day break and then another 5 days. This is round 1.  If it shows success (tumor shrinkage), then I would do a round 2.  I would get a 15 minute infusion of the drug every 8 hours for the 5 days.  Some of the side effects include vomitting/nausea, pain, itchy rashes, fatigue, kidney damage.  That last one is the biggie for me as I now only have one.  At this point I only know of the treatment being offered in Tucson (a 2 hour drive from Phoenix).  If this is the treatment we choose, my mom is going to fly out here to be down there with me so Todd can stay in Phoenx with Teya.  Teya will need to have one of her parents and as much normalcy to her life to get her through.  This will make it easier on me as well knowing that she is at her home being taken care of.

I had a follow up PET/CT on Friday and will have an MRI of brain (no symptoms - standard follow up) on Monday.  I am then heading back down to Tucson on Tuesday to discuss everything with my doc.  I have a list of questions for him to help me decide. There are other treatments out there that I'll discuss with him.  I am also looking into a second opinion with the Cancer Treatmet Center of America in Good Year, AZ.

Here is information regarding the IL-2 treatment:

The other treatments that are less toxic are:

Ipilimumab, this is the one that has been in the news.  I can't get it right now for 2 reasons: 1) I haven't failed another chemo treatment and 2) my tumors are not at least 1 cm.  This drug is going to be reviewed by the FDA on December 25, 2010 and will hopefully be approved soon after.  This drug has been in clinical trials for 10 years and is really promising as it is showing long term results.  1-2 years NED (no evidence of disease).

PLX 4032 - There is a BRAF mutation that has been found for melanoma tumors.  Mine is being tested and if it comes back positive this might be an option for me, but it isn't showing long term "cure".  It has shown close to a 80% response rate in terms of tumor shrinkage or stopping of growth, which is fantastic news, but then progression of growth is shown about 8 months later in a large number of patients.  If I do have this mutation then I would like to discuss my case with the docs running the trial to get more information. 

I'll keep posting as I get information and make decisions.



Anonymous said...

A lot for you to deal with...I am hopeful because you are so young that maybe you will handle the treatment better and not have so many of the nasty side effects. You are in my prayers you...Aunt Kathy

Anonymous said...

I am so sorry to hear what you have to deal with. I had a malignant mole removed in 2004. Since then I have tried to learn as much as I could about treatment. See if you can get more info on IL-2, as I believe it only shrinks tumors, does not get rid of them completely, and when they do come back they come back with a vengence. Surgery would be your best bet. Check out new doctors too. Get 2nd and third opinions. It is more lucrative for them to do IL-2, then surgery. Also, any doctor who tells me the word you are "cured", I would never come back to his office again. Re-search and see what IL-2 does to tumors, unfortunately we cannot rely on doctors for our best health treatments.

Tina Sullivan said...

Just to clarify, my doctor is not saying the treatment would be a cure for me. We all know there is no cure for cancer including my doctor. My doctor has been with me for the past 4 years and wants to give me the best chance for long term results. His opinion is that the IL-2 treatment could give me that.

Anonymous said...

You might want to check out Mike at smelanoma. com. He is stage 4 and is right now looking into cutting edge treatments. He welcomes all e-mails.

Anonymous said...

Who knows there own body as well as you. I have been following your story since you created your blog. Sometimes the new world of internet is a wonderful tool while other times it leaves us confusion. You are a leader in Melanoma research. It sounds like you have research every option. To be scared is very normal. But YOU have always done what you felt is right for YOU. Sounds like you have a good team of doctors with you. Continue your path against Melanoma.

Anonymous said...

I love you Tina and pray for your health and strength during this time. You are a remarkable human being and an inspiration to me. hugs! :)
A Bond