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My appointment yesterday -- what do you think? My appointment yesterday -- what do you think?

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  #1  
Unread 03-27-2002, 06:05 AM
My appointment yesterday -- what do you think?

Hi --

Well, I had my dreaded appointment with the oncologist yesterday to get the results of the CT and blood work to see how my cancer is doing. My CA-125 is still climbing (it went up another 10 points, , but he said my CT looked pretty good -- the two little tumors that I have in my abdomen are either the same or shrinking. He was sort of the frustrating type of MD -- the type that says, "Well, honestly, this could be better, but it could also be a lot worse." I mean, tell me the truth already. I requested to see him because he is really smart and the "chemo guru" here at the University of Wisconsin, but I just don't know what to think. He says that the chemo I'm taking is keeping the cancer in check and is shrinking it a little. He wants me to be on the oral drug for another month, see how the CA-125 goes, and if it continues to go up, to switch to Doxil (doxirubicin) IV chemotherapy, which sounds awful to me. I'm just having a big pity party today. Have any of you ladies had any experience with Doxil chemo? I'm so scared, as usual.

For some good news, I adopted a little black-and-tan dachshund named Molly -- she is about 8 or 9 years old -- I got her from an rescue group. She is just a wonderful little girl and a little hug bug. She will be my "chemo buddy" through all of this.

I love you all,

Cyndy
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  #2  
Unread 03-27-2002, 07:16 AM
My appointment yesterday -- what do you think?

{{Cyndy}}

Well, I can certainly understand how frustrated you must feel, that IS confusing results. Wonderful that the CT Scan results shows no increase and some decrease but the CA125 results are confusing for sure. Does he maybe think something else might be elevating the test results?

I tend to be VERY impatient and want visible (or readable) results but (now this is just my thoughts). I'm thinking, however, that if you aren't comfortable with this, be sure to let them know your thoughts and maybe he'll be able to shed some further light on his treatment plan and why he's waiting another month before trying this new treatment. Possibly this oral type of treatment doesn't tend to show dramatic result changes as quickly as the IV forms???

I'm not very familiar with the Doxil but I did find a drug listing that you might check into... I remember you mentioning they were contemplating the Topotecan, was there any reason that one was ruled out?

http://www.fda.gov/oashi/cancer/cdrugalpha.html#DEF

On the brighter note, congrats on your new little buddy. Doxi's are such wonderful little dogs and a blast to have share your home. I'm so happy she's settling in so nicely, she will really be a blessing to you during this troubled time in your life.

I hope and pray that the next visit comes back with better results and you won't have to change your treatments. Please let me know if you hear anything or even if you just want to chat. As always, I'll be keeping you in my prayers.

{{hugs}}

Vicki
  #3  
Unread 03-27-2002, 07:45 AM
My appointment yesterday -- what do you think?

s for you Cyndy

I know you must be so disappointed!!!! It sounds like you'll just be sitting tight for the next month to see what happens. At least you'll have excellent company with Molly around. Gotta love that name.

Check out that drug site Vicki left you. Two women in my support were on doxil. They both found it very easy to tolerate in the side effect area. If I recall, one of the woman had blisters on her hands and feet, but found this side effect very treatable. No hair loss either. I believe with doxil your ca125 temporarily rises, then drops. And always remember there are so many drugs out there yet for you to try. Success is still in your future!!!!!

As always, you are in my thoughts and prayers.
karenann
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  #4  
Unread 03-27-2002, 12:05 PM
My appointment yesterday -- what do you think?

Hi Cyndy, giving you a big and letting you know that you are in my thoughts and prayers daily.

I know nothing about chemo but a friend of mine is having treatment and she also goes to the top chemo guy in our hospital. It sounds like you are getting the best guy for the job

Now to the new addition....... congrats , Molly will certainly help your days be brighter I am sure. You hang in there Cyndy and dont forget where we are !! Here for you xx
  #5  
Unread 03-27-2002, 12:49 PM
My appointment yesterday -- what do you think?

Hi Cyndy,
So sorry to hear that there is so much confusion going on with your results. This doctor sounds like he is very good, and giving you all the info he has though which is always good.

The flucuations in our tests are hard on the nerves. My marker (LDH) has jumped 30 points last checkup and is now at the high end of normal, so I know how disheartening it is when they jump around.

I don't have any knowledge of that chemo either, but the side effects Karen mentioned sound similar to what I had. I didnt' have blisters, but my hands and feet swelled up a bit, and starting to peel when the swelling went down. That wasn't so bad compared to the severe nausea and constipation I had, so if those are the only side effects hopefully it won't be too bad for you.

Keeping you in my prayers always. So happy you got a little chemo buddy!! How sweet she sounds and will be great company for you!!
Love and Hugs ((((Cyndy))))
Maria
  #6  
Unread 03-27-2002, 01:39 PM
{{{Cyndy}}}

's I don't like Dr. mumbo, either. The truth is, they just don't know everything that factors into wellness with each individual. I don't think they mean to sound vague. I think they try to sound encouraging, yet at the same time convey the need to take our health and treatments very seriously.

The Dr's told my brother and me that my mom was going to die. She saw angels healing her and made a full recovery! Now that's a factor the Dr's had not seen before and couldn't calculate when they made their prognosis. I have read things that say prayers help a person even if the person does not know they are being prayed for. Lots of prayers are being said for you, Cyndy.

And congratulations on your new buddy! I love the name Molly. I am sure she will much comfort to you in the days to come.

{{{{{{{{{{{{{hugs}}}}}}}}}}}}}}

kaatie
  #7  
Unread 03-27-2002, 04:22 PM
Cyndy, Hang in There!

I was at UW yesterday too for support group--we want to move and one major reason is the parking! That and trying to get around in there--I swear it negated my blood pressure medicine! I'm glad I have everything done at another hospital in Madison where I live--I had wanted to go to UW for second opinoin, etc., but have decided no. My docs are all more or less a part of the same group. Anyway--hang in there and give it that extra month on the oral (what kind is it if I may ask?) as the doctor suggested. As for Doxil, I've read a lot about it on the Acor.org board (it's a list server--do you know about it/get it?) and the key to avoiding the effects may be ice on hands/feet during treatment--a lot of the women say it works. Hopefully, you won't need Doxil and the oral chemo will kick in. Lots of ((hugs)) from Madison.
  #8  
Unread 03-27-2002, 06:03 PM
My appointment yesterday -- what do you think?

HI CYNDY,

I STILL CAN'T SAY ANYTHING ABOUT YOUR CHEMO BUT I DO

WANT TO YOU REALLY TIGHT. I'M SO SORRY
ABOUT ALL THE CONFUSION. PLEASE TRY NOT TO

BE TOO SCARED, THEY DO KNOW WHAT THEY ARE DOING.

AS FOR YOUR LITTLE BUDDY, I'M HAPPY YOU HAVE HER
SHE WILL INDEED COMFORT YOU AND BESIDES, YOU HAVE
TO GET BETTER NOW CAUSE YOU NEED TO TAKE CARE
OF HER TOO.
LOTS OF S AGAIN.
  #9  
Unread 03-27-2002, 07:40 PM
My appointment yesterday -- what do you think?

I'll be praying for your treatments and blood counts....and I'm so thankful you have a precious wienerdog for comfort. I love my DoraMae. She makes me laugh and hugs my heart when I'm with her. I'm sure your Molly will be a great friend to hug your heart too.

What a sweet comfort
  #10  
Unread 03-28-2002, 06:26 AM
My appointment yesterday -- what do you think?

Cyndy, I just want you to know that you are always in my thoughts and prayers......I can just imagine how frustrating this all may seem. I know they will find the right drug, it is just a matter of searching through the jungle, until they hit....and they will hit, it may sound cliche, but please don't ever get ahead of yourself, and take it one day at a time.
Until then.....you have Molly, how wonderful!
{{{{{HUGS}}}}}
Valentina
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