Dollfinn
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Posts posted by Dollfinn
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((((((( Donna)))))) HAPPY ANNIVERSARY to you!!! Wahoo, way to get us motivated girl! Wishing you many many years to come with your old friend NED. Mary
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Hello All, miss you bunches when I dont get on board here. The gemzar was no match for my cancer( PS I knew it, my body told me) So before we went to the 11/20th visit, my husband Jerry and myself decided, if he offers that "kitchen sink" option, WE ARE NOT TAKING IT, we do not want to start that until after the holidays. We had a plan. Then on the visit, the DR. says I'd like to start the "kitchen sink" protocol today, and we say.........OK!!!? CEA up to 1310. The acroynym for this protocol is CAMP Cytoxan, Adriamycin, Methotrexate and Procarbazine (a pill). It is all that and the kitchen sink, but hea, I'm here to write about it. Every symptom, every side effect. On Oxycontin now for bone mets HATE it. Love the 5mg instant tabs, but the 12 hr extended release make me so sick. I was wondering about the patch. Any patch slappers out there? Next visit 12/18 scheduled for another dose of CAMP. Has anyone heard from Don? Mary
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(((((((Don))))))) It's been a month I see since your post. Hope your at home enjoying your new digs, that the bump in your road is smoothing out. I am always amazed by your strength and dedication when it comes to beating down this ugly monster. May the the hospice interview act as one big umbrellla that now you have; so it wont rain for a long, long time. Hope you check in soon so we can remind you how much you are missed when you are away from the site. Mary
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Jussi~
Just to put a twist on the family thing. I had been feeling crudy and very short of breath. I began to realize I had limited all my activities due to intolerance, and slept much more. To make a long story short. I tip-toed around what I knew was the next step in this disease. I knew if I had oxygen in the house, I could do more, I could do a flight of stairs and go up stairs to visit my fish. I was pissed but I had to address it. Turns out, after talking to the DR. I have bronchitis!!! This problem was/ is not disease progression
Some steroids and adviar and flying up and down the stairs (well sort of). That was a relief for me. Gemzar is the only med they ever mentioned would have fever as a side effect, and it did. Hang in there buddy.Mary
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Hello All~ I did take Connie's lead and "searched" for liver mets and found some great postings. My onc must of had a hunch for a few weeks. My CEA went from 358 -> 957 yesterday, he says he uses that marker for progression. I have 2 new spots on the liver one is 1.5 cm the other 1.2 cm
I'm interested in this ablation he mentioned directly hitting and burning the tumors, sounds the same? I go back in 2 weeks to see if the Gemzar / Navelbine responds. any Liver mets, I would love to hear from you. I always love to hear from you,
Mary
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My 'new" Doc puts my new Ct scan on his screen with the previous scan beside it! At 1st it looks like the kids sonogram reports, but now we can see the changes. I never get the written report. I think for chits and giggles I'll ask for the report on the 20th.
Go Patti! Go!!
Mary
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Patti~
I'm on the side of the radiologist is paranoid or got yelled at last week! As far as the Pleural effusion goes, hope your PA clears that up. I had Navelbine last year and it was successful, beware of nadir ask if neulasta is helpful with staving that creepy monster off. I had 3 rounds of avastin this summer and was taken off after 3 months of my power port insertion site not healing, I went off the avastin and poof! all healed. keep that Grrrrr in you, I think it is medicinal. Will be watching for your posts.
Mary
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Jussi~
Yuckos!!! But it does make you go Hummmmmmm. Forthe families of the victims, there are no words right now
. We will send our evening prayers your way (some for you too!) Look foward to your posts.Mary
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Jussi~
I went the site you highlighted. I dont read their language
Do you? Hoping I dont qualify. Wanting to research it if I do.Mary
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I am headed for a scan next Tues. Scanxiety has already set in. I got a 4 week break this summer.....it was GREAT!!!! I have heard more then once on this site, the 4th Tx is the
telling"Tx" and thats the one my CEA shot up after 3 significant drops 3 wks apart. With that I have not found anyone w/ a Onc that follows CEA for LC.
Judy, you go girl, abstenince may be a plan for me too. I was thinking Nov. ,Dec., let us know how the visit goes. Mary
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Denise~
Screw the "double hockey sticks" I've just read the thread and am not sure if you have posted anywhere else but how are you guys? Hoping for some doable news, Mary
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Jussi~
Lots of positive energy being sent your way. I see, like myself many second rounders, welcome to the club, you'll stay positive, thats the best medicine. Keep us posted. Were rooting for you! Mary
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Linda~
As a 'caregiver" I salute you! As do I to all the caregivers out there. Your DIL is also a blessing. Many ears make accurate listening. I will repeat lab values ect. and my husband will (very politely) correct me. My profile is all I swear to when it comes to numbers, he does it:) My thoughts?Move toward an accurate diagnosis, next step treatment plan, next step...The Wedding. Were here all hours of the day and night due to different time zones.
Yes it's a crummy place to have to find, but in it's ugliness is the support and knowledge we want to share with you. Keep us posted. Mary
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Lisa~
I was just surfing along when I found your post, and am I glad I did! I completed 3 C/T/A cycles w/ unbelievable results, then boom my CEA went from 152 to 243 in 3 weeks
I was/am a wreck. The onc wanted to start me on tarceva 9/2 I literally begged for C/T/A and bargained him into C/T and a CT scan 9/23. He only had 6 cycles planned and did say he would not cont. if was not working. Should I ask why not 8 cycles? Imagine begging for chemo, but hea I did it once and I'm still here Hope this post finds everyone in one piece.Mary
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Shrimp~
It seems you have taken a big chunk of scary information and your addressing each piece. Remember,pain is now the 5th vital sign and should be treated as any other vital sign. Good Job! I'll look for you in family and updates.
Mary
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Kasey~
Glad you got away and had some family time. I love good news! Glad your back.
Mary
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Barbara~
Glad you found this site. My thoughts are joined with everyone that has posted above. I hope you are able to get a treatment (TX) plan in place and start the fight, you can win!
Mary
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James~
Finding this site tells me your a fighter! Fire away at questions and concerns, any and everyone here will fight with you.
Mary
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Welcome back! Yes! Yes! Yes! we need you. I too, like many go through heart aching grief when the board does not post good news. My family can tell, and I promise them I will give the site a break.Then boom! Here I am sharing ,giving, loving ,laughing and yes crying. This site is a safe haven for me. Where else can you tell a group of people you had underwear on your head and they understand?
Mary
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Neil~
As many here know, I am Irish, hence long winded ( HeHe) guess thats a good thing 2 yrs later! I will PM you with the CTCA details and will post if anyone else has not heard of their approach.
Mary
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Judy~
We found "Cancer Camp" after MSKCC in NYC told me I had exhausted all treatment options and my cancer had advanced from IIIB. The one thing that stuck out from all the others (M.D. Anderson in Huston ; Johns Hopkins in Baltimore ect) is that it is not a research center but a TREATMENT CENTER. Cancer Treatment Centers of America, located through out the country. The newest in Az. where my son lives. I go to Philly, PA. A 2 hr. commute but well worth the ride. you can google them. CTCA is the acronym. I recieve all therapies they offer, not just chemo.
I also cant wait to hear to hear from anyone also tracking CEA numbers as Sloan does not track them either, but it gives me hope every 3 weeks when that tumor drops down
A
y port in a storm at this point!Mary
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Yes, CEA is a "marker" much like PSA or CA125. MSKCC in NYC does not use them either. Perhaps because my PET was so crummy? All I know is CEA is a test for tumor markers and mines coming down with great alaricity. Another funny thing is, Im having a chest x-ray on the 29. That was added on after I saw the onc. It came up on my next "schedule". I didnt report any change in symptoms. Just the Post nasal drip.
I will not stew these next 3 weeks, and camp is 200 miles away, so for time being, I'm going with it. Beats the heck out of hospice. But now...........I must post the question, has ANYONE had success following CEA values?
Dont make me use a Hall Pass
Mary
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Hello All~
Here I am at CTCA Cancer Camp, kicking butt. I am in a state of elated shock. The only thing that hurts is my face from smiling. My CEA is now down to 157 after just 3 Tx's. I started at 395 6/17/08!!!
Funnier note, I wear my cotton head cover for my 6 hour drip. I arrived in the height of fashion in my wicker hat, with the wide brim, broken in to perfection. Just as the plumber arrived ( my chemo nurse) I went to switch from my wicker hat to my cotton head cover, but instead grabbed my backup pair of underwear! Gotta love your caregivers. Thank goodness for my Jerry. Lets get a hea yeah to our caregivers!
Mary
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Linda, Judy~
This is a crap shoot! My onc. yesterday is leaning to laryngitis's is due to post nasal drip! Go figure . Zyrtec does help, the next 3 days I am on claritin to reduce bone pain from neulasta and that does help.
The taste thing OMG, I'm in for 3 days of nothing tastes the same which I attribute to taxol?
Will be posting my new , CEA 3#s. 152 down from 395 6 weeks ago! 3 TX's to go.
Way to go CTCA!
Mary
Some steroids and adviar and flying up and down the stairs (well sort of). That was a relief for me. Gemzar is the only med they ever mentioned would have fever as a side effect, and it did. Hang in there buddy.
. We will send our evening prayers your way (some for you too!) Look foward to your posts.
hospice
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Posted
Don~ Hoping that new room is keeping you comfy. sending prayers for comfort .Hope you get your internet hooked up soon! Mary