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

Surgery is scheduled.

6-11. No idea what time. They won't call me until Wednesday to tell me what time to be there on Thursday. Oh well. Nervous. I HATE surgery. AHHHH.... could be either only one night or two though. That's not so bad. I better not have to be in longer than that. UofWA Medical Center.

Went camping this weekend. Very wonderful. Just went to Lake Goodwin. Wish there had of been more sun!! Went in the lake Sat and Sun though. Wasn't so bad after you RUN in. :) It was me, Ron and Hailey, Charles was there for both nights too. Lizzy came up and stayed Saturday night. Shaun and Troy came up on Sat night too, didn't stay over but might as well have, it was sooooo much fun.

Came home to a "surprise" birthday party for me. Got a ton of wonderful stuff. Some great gift cards, my original birth certificate in a frame, baby blankets from when I was two or so, scrap booking stuff, a calendar organizer, a very nice watch, coffee cup, charms, a plant, cash and more.

Thank you everyone. I love u. xoxo Dawn

consultation

well, the consultation for surgery is scheduled for 6-3, I will be in Seattle all day. My dad is going with me. They will be scheduling surgery on that day. Not sure when it will be.... hurry up and wait. Gotta love it.

Thanks everyone.


xoxo

Dawn

Weekend

Hope everyone is having a good weekend. Went to the drive-in last night. It was wonderful!!! Terminator and Star Trek were playing. Ron and I went in the tow truck. Boy do kids just love that truck. They wave and smile and yell "hi!!!". As soon as we park here comes the sheriff. First words out of his mouth.... "you lookin' for somebody?" Nope, it was funny, "is it as bad as they show on T.V.?" Nope. That's usually every one's first question. Not that exciting. Rarely exciting. But fun.

Surgery. ASAP.

Well this sucks. So much for organic making a difference in 2 1/2 weeks. The 3 new spots GREW. Damn. The doc said I must go in for the "next available" surgery time. :( Back to the hospital. Damn. They will biopsy one of the nodes.... it could be an infection.... or cancer. Then we will go from there. I meet with the doctor 10 days after surgery. Not sure yet how long I will be in the hospital. The gal better call me today with my surgery date. I am a VERY impatient patient. Maybe I am just being cynical but I told the doctor.... "I know it's not an infection" and you want to know what his response was???????? "I know, we just have to prove it". AAAAAAAAAAHHHHHHH!!!!!!!!!!!!!!!!!!!

Comments would be nice. I know you are all checking for updates but a few uplifting words would be greatly appreciated. :)


xoxo

Dawn

TOMORROW.

Nervous about tomorrow. Should have results on newest scan by 2pm or so. My dad is going with me. All day in Seattle again. Hope it doesn't resort to that for months and months again.

Is all this worth it??

Organic, free range, no sugar, no coffee.... AHHHHH is it doing any good? It is tough. If I was single and lived alone it would probably be much easier. It really sucks though sitting at the dinner table eating a Boca burger that has been chopped up in a HUGE salad while everybody else is putting gravy on their non-organic potatoes and having some roast (red meat). AAAAAHHHHH I may just KILL for a coffee one of these days. I want a MOCHA. Thanks to everyone that is staying updated with me again. I was gone for quite a while. :) Sorry. Love ya!

Off to read a book.

Eating Organic and the OCA

I went to see a cooperative alternative medicine doctor that specializes in cancer patients. He's based out of Swedish in Seattle, last Tuesday was my visit with him. I KNEW I should have gotten an espresso before going there. Boy did he tell it to me straight. No red meat, well... once a week two times a month is OK. But only free range, chicken and turkey too, only organically grown veggies and fruits, green tea and "filtered" water. That's what I get. No coffee, no Diet Coke, no regular Lipton Ice Tea, as little sugar as possible. Fish is okay as long as it is "wild" salmon or cod, nothing else. Organic dairy products, organic eggs, good luck finding organic cheese... I'm staying with Tillamook. The package says something about no bad stuff in the cows it came from. It is VERY hard to get in 64oz of water per day, along with at least 3 8oz cups of green tea. (it's not bad, but it would be nice with a little sugar). 2-3 fruits a day, 5-7 veggies per day, 64 grams of protein, and attempt to reach 2100 calories per day to maintain my body weight. It is harder then heck to reach 2100 calories!!! I did it today though! Actually got about 2800!! It's only do to the fact that I got a vanilla flavored protein powder though. TONS of protein and TONS of calories. A perfect lunch. I am about fed up with salads. That's about all I eat. Or so it seems. Add a Boca Chicken patty, to my salad, spice it up for the day. I am still so new at the "eating healthy" thing it's hard to get used to. Recording every oz. of food I eat, making sure to write the calories and protein down. Search after search of how many calories in this, how many calories in that... found a great website to help with that though http://www.thecaloriecounter.com/ check it out. I will end this with the thought of.... I really need to get my calories up. To maintain my current (well previous) current weight I needed to eat at least 2100 calories. I have lost 9 pounds in 6 days. Not a bad thing. But not what I was trying to do. Organic Soy Chocolate Milk is good. Organic cream cheese tastes the same. OOOOOOOhhhhhh STAY AWAY FROM ORGANIC COTTAGE CHEESE. That was not a tasty experience. I have only tried two different kinds, but oh boy. Not so good.

I can say that I have felt much more energetic and healthy since starting this way of eating. Not going to use the word DIET, just sounds like a bad word to me.

BTW my title links you to the Organic Consumer Association (OCA) if you are interested in checking it out. :)

Have a good night everyone.

I'm still here!

I am still around... :) trying to get updated on the Internet. I have neglected all of you and haven't kept you informed. Sorry. After my stem cell transplant I went through a bunch of radiation. My 3month check up was in the end of April, on the 27th of April I found out that I have THREE new spots. In my lungs. The plan right now is to wait until the 27th of May and get another scan to see if the spots have either stayed the same, gotten bigger or gone away completely. We of course are hoping for gone away completely but nothing is for sure. If they get bigger there will possibly be a biopsy, and if the stay the same I will just have to wait another 30 days and see what happens.... so that's a mini update. I promise to get back on track with blogging. My laptop has a desk area in my room now so it is easier to set at it and type. :)

Love ya!!

Dawn

Happy New Year!

Merry Christmas and Happy New Year, it's been so long since I posted. Sorry for that. I find out tomorrow what the results of my PET scan will be. Three options at this point can come out of it. 1. I'm all fixed and don't need any more treatments, 2. I may need "spot treatments" if there are small areas that are still active, 3. mini allogeneic transplant, using my sister's stem cells. Nervous about tomorrow. Thank you to all my friends and family for standing by me during this time. Boy was it nice have a couple weeks vacation from thinking about cancer. :) Talk to you all soon....



Love,


Dawn