Update #12 - 2/28 - Treatment confirmation

Hi there :-)
After a roller-coaster week of tests, results and appointments here are the updates:

1) I asked Dr. Thompson of SCCA to have a radiologist compare my first (Dec.) PET CT with my most recent (Feb.) PET CT/CT to see if the right shoulder and right groin were on the first PET/CT as well to ensure I actually have re-occurrence and Stage 4 Melanoma - meaning it has spread beyond the regional area. After doing that, to his surprise, he said yes those areas were not new or re-occurring cancer, they were there from the beginning. So the shoulder area could be a false positive and the right groin area could be stress on the nodes from tearing ligaments in my right ankle in Dec. Though due to the different types of tests, he cannot measure them to see if there is a difference in their size from Dec to Feb.

2) I then decided to have an MRI of my abdomen, chest and pelvis on Monday, with the advice of Dr. Kaplan from Swedish Medical center, to help clarify if those areas were actually melanoma tumors or not, and the good news is that the MRI came out clear. So according to Dr. Kaplan, I am not at Stage 4 since the MRI didn't confirm the PET CT /CT results. Yet he said that I still have a very high chance of re-occurrence due to how aggressive it was in my left groin area and he would still recommend high dose Interleukin 2 - normally used for patients with metastasised melanoma. Interferon is only used when there is not metastasized tumors and he doesn't want to risk it by not going aggressive enough the first time out!

I was not very happy with the lack of thoroughness with the SCCA team and their recommendations of treatment seemed not to make sense plus Dr. Thompson was leaving for a conference on Thurs/Fri and wanted to delay my treatment decision until the following week. So when Dr. Thompson called me on Thursday and said that due to the updated information with the MRI, that I do not qualify for his ALT-801 trail, as there needs to be confirmed, measurable metastasized melanoma, and the MRI didn't show that, I quickly thanked him and said that I would continue treatment with Dr. Kaplan at Swedish.

3) I had my appointment with Dr. Kaplan yesterday and I am scheduled to go into Swedish Medical Center on Monday for High Dose Interleukin 2. I will not be in ICU unless I need to be. I will be in there for 14 treatments, spaced about 8 hrs apart. I will come home once I am able to - which could be after the last treatment, or a couple days later, once I am recovered. I then go back in for another round of 14 treatments the following Monday (about 9 days later).

I am not sure how my body will react to the toxic drug, hopefully I will just breeze right through it and be home for the weekend. Along with Doug and my mom helping, my very good friend Sharon will be visiting me March 9-13 to help at home and with the girls.

Thank you all for all your love and support and I look forward to getting through March as quickly as possible.

~Keri

Update # 11 - 2/18 (updated 2/20)

Hi All,
Updated version...
At Tuesday's meeting, we heard that my Brain MRI was clear :-) and here are my options for treatment that I will most likely start on 3/2.

1) High dose Interleukin 2 (IL2) OR
2) Interleukin 2 - clinical trial called ALT 801 (being done in Seattle, Denver and Florida)

We learned about a stage 4 clinical trial that uses IL2, yet not as toxic of a dose. It is a more pointed treatment at the area of the infected nodes/tumors as opposed to everywhere. I would still go to the hospital for 5 days, then 9 days rest, then 5 days back again, but I would not be in the ICU.

We will know if I qualify for the ALT-801 clinical trial when the test my tumors to see if they have the protien P53 in them. They are working to send them off today (2/20) or 2/23 and we should know late next week. If they do have P53, then I will do the clinical trial, if they don't then I will do high dose IL2.

The blog will be updated Friday 2/27.


Thanks again for all the comments and support!
-Keri

Update #10 - 2/15 - Treatment

Hi all,

We have had a busy 2-week period of State tournament soccer games (Kourtney's team lost in the Semi finals today :-(, Alexa's 10th birthday plus her soccer and basketball games, and we had Doug's sister, Deb, and boyfriend Alan from Colorado visit us. Also, I had a few Dr. appointments and tests and wanted to get through the weekend before updating the blog....so here is the update.

I ended up with the A2+ HLA blood type, yet when we did another PET CT on Thursday, they did find a new, very small tumor in my right shoulder area. Also, my right groin area (the other side from surgery) is still a little suspicious, so more tests may have to be done to confirm. Though they now believe that the melanoma has traveled into my blood stream (in-transit or Stage 4). We believe that these results disqualify me for the clinical trials discussed earlier and we will go straight to our other aggressive options of interferon &/or Interleukin 2.

I have another appointment on Tuesday with Dr. Thompson from the SCCA (Dr. Margolin is out for 2 weeks), to finalize my treatment decision/schedule and get the results of the Brain MRI I had on Friday, but we believe that I will most likely start my adjuvent treatment on Monday, 2/23. Also this coming week, I will get fitted on Monday for a compression stocking (to help prevent lymphodema) for my left leg, I will have a stress test on Wed. to ensure my heart can take the aggressive treatment, and I will be giving blood on Thursday so another SCCA Dr. (Dr. Yee) can prepare it for other possible treatments (T-Cell therapy) later on down the line if need be.

So on Monday, 2/23, if interferon is given first, I will go through 1 month of daily injections and be at home with bad flu-like symptoms. If I go straight to high dose Interleukin 2, I will be hospitalized for 5 days in the ICU with severe flu like symptoms, then 9 days off at home, then 5 more days in the ICU, then 9 days off. After which more tests will be taken to see how my body responds and if the tumors shrink. Or I will do a combination of interferon and then Interleukin 2.

In either case, the next couple of months will be tough, but I am ready to finally begin aggressive systemic treatment to fight this cancer head on.

Thank you again for all your love and support - I will update the blog again on Tuesday night when we have finalized my treatment decision/schedule.

~Keri