Not over yet... but almost!

No signs of cancer in my body. WOW. No idea how much more treatment.... two more months of treatment, then another CT scan. Then 2 more months of treatment and another scan. There is light at the end of the tunnel. Interesting.

Biopsy

Well, an appointment is scheduled for Monday at 9 a.m. to "discuss my options" (like I have any!) and talk about having surgery. How dumb.

No more treatment right now.

So had my PET on 12-18.... got the results of them today. Treatment was canceled. I have more growing nodes in my neck. Both sides. It's a significant enough growth that the doctor is concerned that it's still the cancer attacking me. I have been taken off the clinical trial drug for now because if it is not going to work then he won't be having me take it. I have to be scheduled for another neck biopsy to remove one of these enlarged nodes and confirm it's the same cancer or whatever. Very frustrated. Was so excited in the beginning to have something that was FINALLY working. Doesn't sound like it is working anymore. It appears from what I can decipher on the foreign paperwork I was sent home with that the previous nodes shrunk quite a bit but there was significant growth in other areas. The doctor was sure to state "sorry for ruining your holiday" and "sorry about the bad news".... I am trying to be okay with all of this. I really don't want to crumble. When you stop hearing reassuring things from doctors though you begin to get worried. A simple "Merry Christmas, we will get this all figured out soon" would have been a little better.... anyway that is all for now.

I will be sure to post when my biopsy will be so everyone is informed.

Merry Christmas to all and to all a good night.

A Pivotal Open-Label Trial of SGN-35 for Hodgkin Lymphoma - Full Text View - ClinicalTrials.gov

A Pivotal Open-Label Trial of SGN-35 for Hodgkin Lymphoma - Full Text View - ClinicalTrials.gov

Treatment.

Well next treatment isn't scheduled until Dec. 2nd. My next PET isn't until Dec. 18th. Last I heard doctor was still talking about maybe having another transplant in Spring. I really don't want to have a transplant if it's not NECESSARY. If this drug is working and things are shrinking I would rather maintain success then have a transplant and then not know what the next step would be if it doesn't work. It's hard to get answers from them sometimes because it seems that any question I have they respond with "we will deal with that when we get there". Very hard to plan anything. Of course I will have to live within 30 minutes of the clinic for transplant. Ron is working on getting a job down south so we can move down there (south Snohomish Co./North King Co.) so come transplant time... whenever that might be.... we wouldn't have to move again. Hailey would have to change schools but I think that if it is done early enough, ie. elementary school, it shouldn't be too bad. That's all for now.

HAPPY THANKSGIVING!!

Please comment SOMETHING if you read this. I would like to know if anyone is reading these... if so, I will keep posting...

Four treatments so far

I have had a total of four treatments so far. This last treatment on 10-8 wasn't so bad. I did have Hailey's birthday party on the 10th and that was difficult. I was very tired and stressed. Results of the most recent PET showed good signs of everything still shrinking. The doctor did explain though that it could be recommended that I receive the full 18 doses or more. So... most likely another year of treatments. Doctor said also that if by chance in the next month or so EVERYTHING disappears it is possible to have my mini transplant after the first of the year. But most likely that will not happen and would rather let me continue on with the trial for as long as I can so we can make sure the cancer is dead before the final step of the mini transplant is done.
Thanks for reading.
That is all for now.

p.s. a mini transplant would require at least 4 months (with no complications LOL) of living within 30 minutes of the clinic. When that mini transplant might happen no one really knows.

Thank you everyone

Thank you everyone for taking the time to find my new web address. GoDaddy.com has given us some trouble and it is not worth giving them over $90 to keep my web address. Please bookmark this updated address so, if you are interested, you can get updates on my condition.

treatment...

kicked my tush this time. Very tire today. ALL DAY. It always seems that the day after is the worst. Hopefully 2mrw will be fine. The tips of two of my fingers on my right had are still numb and tingling. It's been this way since Thursday night. The doc said to just keep an eye on it and if it gets worse to let them know. It's a side effect of one of the chemos I had. No idea which one. That's all for now.

Seattle Genetics Clinical Trial

A Pivotal Open-Label Trial of SGN-35 for Hodgkin Lymphoma

**click on title**

Shrinking!!

I can't believe it!! The are shrinking!! 11 total, 8 have shrunk and 3 have stayed the same. I have never in this whole journey gotten good news!! It's hard to believe! Got treatment yesterday. Could still get up to a year of treatments before I would be done. Anyway... success~~ I am so HAPPY!

I wish for

a Cavalier King Charles Spaniel. Tri-colored. Puppy. Anyone with access to a magic lamp, magic wand, enough money to buy one, friends of a breeder.... send them or it my way!! I need a PUPPY!

Will I ever work again?

I hope so. When? No idea. I've lost the true passion I had. I loved my job. I loved the people there. I hope they are still having a good time and laughing a lot. I miss chatting with Melinda, I miss hanging out with Judy, I miss talking to Sean in his office, I miss Kathy suggesting books and hearing about her puppy (probably not a puppy anymore), I miss Cyn for all of her wonderful honest advise on everything. Damn. I miss that place.

CT scan

Had CT scan yesterday. Will get results on the 20th when I have treatment. It was a head/neck and abdomen scan.

Hi everybody...

Had my first treatment of the clinical trial med on July 16th. My next one is this Thursday. My grandma's birthday. :( We will be staying in Seattle Thur and Fri night. Excited about that. A blood draw is required 24hr after treatment, treatment is at 4 on Thur and then back down there at 4 on Fri for blood draw. The company Seattle Genetics http://www.seagen.com/ is covering the cost of a two night stay anytime it is needed. Seattle on Tuesday to see the Pain Clinic for my back. My doc said I couldn't get injections while I am on trial so they are getting me "pain management" help for my back. That's all for now. Promise to update more.

xoxo

Dawn

cancer, cancer, cancer

well.... of course it's cancer. 4 or 5 new spots in my right lung and a couple in my left. They removed one from my left to confirm it is cancer. They will be doing a new clinical trial on me. They won't start treatments until mid July. I have to have a complete re-staging done. CT, MRI, PET, EKG, and bone marrow test. After all of those tests are done they can start the treatments. Instead of chemo it will be infusions of an enzyme to attack the cancer, 1 1/2 hrs in Seattle every three weeks for six months to a year. depending on the results. they will continue to test me during all of this to see if it is even working. after all of the treatments, if they work, after a year or so, I will have ANOTHER stem cell transplant. I go in 2mrw to sign the paperwork for the clinical trial. Then start scheduling tests and crap. Anyway. that is all for now. ttyl. love u guys.

Dawn