Wednesday, April 23, 2008

Latest Update

Hello Family and Friends,

In laymen's terms (because doctor speak hurts my head), this is an update on the progress of my treatment. So far the treatment is doing what it is supposed to do. Here's what we know.

• There are 3 tumors in the lower lobe of the left lung and one scar tissue in the mid back left lung.

• There is one scar tissue in the mid back right lung from the metastasis removed ten years ago. I have no idea why there is scar tissue in the left lung.

• The two lesions that are scar tissue are 5 mm each with *no activity* nothing to worry about.
(**No activity means there's has been no change from the last PET-CT, which measures the size and for a lack of better words, how alive the each *tumor* is.)
(**Tumors are living cells that are fighting to stay alive by killing healthy cells. The bad ones are malignant/cancerous.)

• Two other tumors are 5 mm also no activity.

• Finally, the tumor that has me on this miracle treatment Rexin-G, has doubled in size from 1 cm to 2 cm.

But not to worry, the enlargement is expected. The Rexin-G causes necrosis or calcification of the tumor from the inside out; causing it to swell. Although it has gotten larger, about half of the tumor (+/-) has calcified/died after 2 cycles.

Oh. Because the size of the tumor has increased, I will now have double the dose of Rexin-G; and will find out tomorrow if I will have the pleasure of being treated 3 times per week versus 2 times per week. Got to love that drive to Santa Monica. NOT! I'm hoping for 2 times, double the dose. Hope spring eternal. You know?. I'm sure it will be 3 times like 99.8% other others in the trial.

BEGIN RANT
It's really stupid that the protocol for the drug only allows patients with 1 cm active tumors to receive one dose as apposed to two or more because of the tumor size. It has to be larger than 1 cm in order to receive double the dose. The FDA doctor who sets the protocol for this trial has yet to realize that one dosage of the Rexin-G does not promote shrinkage of the tumors.
Myself and one other patient, during this phase 2 of the trial, have received one dose of the drug during each treatment, and our tumor's have increased in size not decreased (and all the other stuff I said at the top). Phase 1 had the same results. You'd think the FDA doctor would get a clue by now and figure out all patients on the trial should start off on a higher dosage. But that would be too easy.
END RANT .

One of my adopted dads Dr. Chawla, 'Head Oncologist extraordinaire' and his lead researcher/assistant, Vicky 'the Neck of the Sarcoma Center' (the neck controls the head and all who came after her), would like me to have surgery within the next 2 months or 2 treatments.
Anytime from 2 weeks from now to June. That being said, I will plan to have the surgery in the middle of June, after my B-Day, (6.16 incase you've forgotten )... cause I plan to celebrate the last year of my 30's in half the month instead of the usual entire month. Ok. I've digressed. Back to what I have to do.

I will have completed 2 more cycles of Rexin-G (4 weeks on; 2 weeks off; Twice) and 2 Pet-CT scans at the end of each 6 week cycle. The 4th cycle will complete June 9th; and the surgery should be the week of 6.16.08 (any day after 6.16 of course). Providing, of course, all doctors and I agree on said time/date. More than likely I'll be at St. Johns in Santa Monica, because that is where my Thorasic/Pulmonary (Lung) Surgeon, Dr. Leland Foshag from The Ohio State University (Go Bucks!), works out of.

Unless I can convince him to sign up at Little Co. of Mary in Torr., I'll be in Santa Monica, where the parking sucks .

I'll send another update as things progress. Until then, I am looking forward to spending our fifth wedding anniversary in Maui ; and stay positive. Again. Fourth times the charm, Ya'll.

Thank you for your continued love & support,
Kendra Krause
13 year Osteo Sarcoma survivor

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