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As promised:Update


Outrider1

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Hello all,

I know you were beginning to wonder " where's Dawn's update?" Well I finally have some news,

I finally saw the Oncologists, and they decided my platelets were to low to do chemo. they were 136 when I left Dallas after my second round of chemo. Two weeks later when I see the onc.s here in Little Rock, they say they are only 36 (I firmly believe that that was a mistake made by the lab , and they misplaced the one(1)before the 36.) So they said wait a week and see if it recovers.

Okay I wait another week (two weeks after I should have had my chemo) and the platelets are back to, you got it, 136. Isn't amazing how all these numbers seem the same over time? Them they asked how the doctors in Dallas determined the lesions on the outside of my skull were cancerous? I told them that I had had a combined pet/ct scan and that they did a ct of my head. And them they had a radiologist determine that they were probably cancer and they( the Dr.s in LR) just needed to read all the reports and the fact that there had been some discussion on cutting my chemo to only 4 rounds....Then they decided to do a ct scan of my head, abdomen, and pelvic area. So I waited a week for that.

On the appointed day, I showed up a little early so I was the second person to have to drink 4 small styrofoam cups (small cups) of this orange contrast stuff, that tasted like diet sunkist orange soda. And mind you they still had not let me go to the powder room, I felt like my eyeballs were floating in a sea of orange soda!

So they take the scan of my head and and the other aformentioned areas. and then gave me the injected contrast that makes you feel like you have suddenly spike a fever all over. I hate that stuff!

So, then we wait another week to get the results. By this time I was ready to just tell the oncologist to finish the damn chemo, however, he had some different news for me. They decided that the lesions on my skull were possiblely caused by what everyone(except the neuros in Dallas) agrees is my still undiagnosed MS. The lesions are a symptom of Ms and don't usually show up in sclc like they did in my head. The doctor also said that they had not seen many patients with sclc live as long as I have after my chemo. When I said that they got a biopsy from my right lung and that sclc was the diagnosis, he said that he was sure that it was sclc, (especially after I told him if he needed to see everything back to when I was diagnosed, that I would be glad to bring him all of my medical records going back to my gallbladder surgery in 2004). Then he said, that the amount of mets that I had, when first diagnosed, and the suv were charted pretty high at that time in all areas of mets, and were all still slightly lower than they had been for the last 3 years (they were lower because of the two rounds of chemo I had already had.)And that the areas, that showed no more mets still showed no mets, and the affected areas were still my left hip and femur and the two vertabra in my back.

So to make a long story short, they decided, no more chemo, and we'd scan again in 3 months to see how it was going and if the lesions were getting any worse(ie. bigger), and that suits me just fine. Then I had to go see my new PCP. who refilled all my meds after I told him the onc. had already done so, and also scheduled me an mri, which I promptly canceled, as I don't believe in unnecessary tests.I told the nurse in the mri scheduling office, if my pcp wanted an mari, to just look at the one from dallas that I had in the middle of August when I was admitted to the hospital to make sure I wasn't having a stroke. I did not tell you about it in an update because I honestly don't think the migraines and resulting symptoms are caused by my cancer. But I will tell you about at a later time if you are interested. And the Dr.s here said since no one has done a biopsy to the lesions. they don't consider it a recurrence of my cancer. And he also said that miracles happen all the time and I must be one as I have survived so long with an sclc-ext. diagnosis.

Sorry this was so long but this has been more trying than if they had just stuck with the chemo as scheduled. Iam glad we didn't have to, cause I'd like to get some of my hair grown back in before it really gets cold here. It gets colder earlier here than back around Dallas and I really don't want to bald when it does get cold.

There you have it, and it's back scans every 3 months. At Least they are not pet scans, so I won't glow in the dark this halloween, lol.

I will be checking in more often now that things have settled down a little bit.

Be looking for you in the funny papers!lol Have a blessed day!

Dawn

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Dawn, I am so sorry for this. I'm gathering the chest was clear and the extended chemo was for the brain lesions. Hope things turn out well for you in the 3-mo followup scan.

I know a little bit about working between more than one onc. The one in Key West who is only supposed to be overseeing my infusions here said to me yesterday, "Let's face it, most people with your diagnosis would be dead by now." That was only part of his spiel disagreeing with how my MDA Onc is treating me. Hope you can gain some confidence with these new docs. It's tough.

Judy in KW

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Dare we ask what you said in return? Or at least in your head a few hours later?

Dawn - I hope you are feeling well off chemo. I've only been off 4 weeks and someone today commented on how bright eyed I looked this morning. Yes, in the a.m.!

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Judy,

I need to clear up some confusion about the lesions on my skull. These lesions are on the bone beneath the skin and muscle. they have not broken through the skull and reached the fluid or through the Dura (the tough sac surrounding the brain and inclosing all the fluid) I can feel where they are or were if I rub my head.

I just hope the Dr.s here are right, and that they were being caused by the MS and not the cancer...

So my fingers are crossed until the next scan.

Dawn

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