~Husband's 2nd Petscan Results....

Believe51 · 10-24-2007, 06:35 PM

Not the news we were aiming for but the Tykerb/Xeloda recipe is not working for hubby. Petscan showed progression in bones but the good news is it is not in organs. We almost felt that it was not working but needed to give it some time to be sure. Ed will start a new chemo regime after a 2 week break from the current drugs.

His numbers are as such: Ca27/29 is at 350 and the CEA is 7.2!!!! They have steadily rising over the last several months.

We did find out where he has some arthitis so that will help with the weather related pain explainations for this coming winter. Of course he has cosen to try another chemo regime. Ed will be on Adriamycin/Cytoxan and will be starting that on 11/9.

What else can I say? Damn you Cancer, give us a break!!

I know I have learned about this combo many times before but any feedback on this combination will help us to fight this dreaded disease a little better. No use crying over this (even though I am). We are so disappointed. At one point we were almost in remission, only for a moment, and it has never let up since. I am prepared for anything at this point, have been for some time now.

Our blessing today: He is still here to fight, Brain MRI showed improvement, Not in organs, Some arthritis, New chemo recipe prepared for take off.

and girls...how do you say

Ugggghhhh???? >>Wiping my eyes so I may say Thanks>>..Believe51

Margerie · 10-24-2007, 07:29 PM

Believe-
I am so sorry you both are having a tough time. I did have A/C and I found the anti-nausea drug Emend to be a winner. I also got a smoothie to drink during the infusion. I heard it helps to suck on something cold to prevent mouth sores- and it must have worked because I didn't get any. I don't think I will ever drink another smoothie again however.

I hope Ed gets good results and the side effects aren't too bad.

PinkGirl · 10-24-2007, 07:47 PM

Believe
I'm so sorry you and Ed didn't get the results you were hoping for. I know that after this news settles in, you will both be ready for the next step.
I had A/C x 4. I used Kytril for the nausea and it worked great. I also drank tons of water because the cytoxan can affect the lining of the bladder. It
makes you have to pee "urgently". My chemo nurse always gave me popsicles to suck on during the treatment to help prevent mouth sores. When I could no longer look at another popsicle, she gave me a cup of ice chips. The worst part of A/C for me was the nausea, but I never vomited,
and the nausea was about for 4 days after the tx. Good luck with all of this.
Ed is very lucky to have you.............and Tippy.

chrisy · 10-24-2007, 08:49 PM

Well, I have other words I would use. Seems you just can't get a break. I so admire how resolute you and Ed are. Keep pushing forward. Have you considered getting an assay test done to help find the right combination?

Anyway, not all the news was bad - no organ involvement is definitely a good thing. So is improved MRI. And, silly as it sounds, so is arthritis pain. Only WE would consider that a blessing.

Cry on tip's shoulder. I think although she is tiny, she has big shoulders.

Hang in there.

Much love
Chris

hutchibk · 10-24-2007, 09:09 PM

Damn it. OK, onward and upward... A/C was a nausea machine for me, but only on days 3 and 4 after a treatment. I never threw up. And I took my meds on a very disciplined sched to stay ahead of the nausea. I liked Zofran - but only for the worst moments... Zofran ODT (which my nutty infusion nurse said means "on da tongue" LOL), but actually Compazine worked well for me too, and is a lot less expensive. And I just ate little meals about 8 times a day when I had the queazies, and that usually helped. That and just sleeping through those two queazy days each cycle... that really helped. Ice cubes and popsicles (during infusion and a couple of days after) really helped mitigate mouth sores.

I just read an interview with Richard Roundtree today (Shaft) - who had breast cancer many years ago. It was interesting.

Love and prayers to you and Ed. Maybe read some of Lani's posts about the new stuff in the pipeline like IXEMPRA(TM) (ixabepilone) - and ask you doc if any of it applies to Ed.

tousled1 · 10-24-2007, 09:43 PM

Marie,

I'm so sorry to hear the news but it's not all bad. Brain is good and no organ involvement -- both positive. I had A/C when I was first diagnosed. I strongly recommend EMEND for the nausea it worked for me and I was never vomiting. Also drink plenty of fluids. Since the Adrymiacin is via IV push bbring some popsicles for Ed to suck on while he's getting the "red devil." The main problem I had was mouth sores which I got a prescription mouthwash for. Also my counts dropped -- but that seems to happen to me no matter what chemo I'm on. Hang tough. Ed can get through this and hopefully NED.

dhealey · 10-25-2007, 04:17 AM

I too took 4 rounds of A/C at the beginning of my treatment. I took Emend, Zofran, and phenergan for the nausea. Usually lasted 3-4 days. No vomiting. Must also drink tons of water so the kidneys are damaged from the cytoxin. Ice chips and cold drinks help during the infusion to keep the mouth sores at bay. Must be careful of infections as this combo depletes your white count. I was given nuelasta for this and I stayed away from crowds and washed my hands alot. I work in a family practice office (nurse) and I did continue to work, wore a mask when around patients with infection. Be sure he takes his antinausea meds as prescribed and don't try just to tough it out. I tried that at first and didn't work, then I took the meds like I was supposed to (very stubborn) was much easier to get through the treatment. I did lose alot of weight on this combo though. I pray for continued strengh for you and your husband as he continues to fight.

Mary Jo · 10-25-2007, 05:25 AM

Dear Marie,

I'm sorry you and Ed have to go through this. I truly am. I'm sorry for any and all who have to experience the roller coaster ride of cancer. It is so draining. Physically and emotionally. BUT, it CANNOT take your spirit or your resolve to plunge a head. And plunge a head you are.

I did 4 dose dense cycles of A/C (every 2 weeks). I took Zofran as my anti nausea med and it worked well for me. I handled A/C well or I should say as well as can be expected. It was the hardest of my chemo regimens but I did handle it. I worked and functioned at ALMOST my normal level throughout the 4 cycles. I remember that cold slaw and mashed potatoes from KFC is all I could eat though at the beginning but at least I could eat something that tasted alright and I never got sick.

Praying for God's arms to hold you both close. Praying that He would send Peace to you both.

Love to you Marie and Ed.

Mary Jo

nitewind · 10-25-2007, 05:37 AM

Hi Marie, I'm so sorry to hear this latest news but on to the next step. I received 4 treatments of a/c. After the first one, we discovered that if they dripped the cytoxin a little slower, I avoided headaches. Also, I was told to start drinking plenty of water a couple of days before infusion and the day of. I agree with the Emend, but make sure he takes it before he gets nauseated, it's a lot hard to control when the nausea kicks in. Remember, if one anti nausea drug doesn't work for him, there are many to choose from. Best of thoughts to you both. You are always in my prayers.
Hugs

nitewind · 10-25-2007, 05:39 AM

Forgot to add.....Biotene mouthwash was wonderful, I used it religiously and never had one mouth sore.

kareneg · 10-25-2007, 06:15 AM

Dear Marie and Ed,

I am so sorry about the news from the petscan. And I am praying as always that this new treatment kicks the cancers butt!!!!!!!!!! Love you both.

lilyecuadorian · 10-25-2007, 06:47 AM

Marie and Ed I'm still waiting for the other 50% miracle that was left ...Dont know how or with witch treament .or prayers .but we are going to get it the other 50% soon and I'still thinking and pray about both of you ...be patience , keep strong and always keep the figth spirit ...UP

Mary Anne in TX · 10-25-2007, 07:03 AM

Hi Marie! You've been given such good, loving tips on what to do. We all love and believe in your dream of NED! One day at a time, girl, one day at a time. Lean into our belief and love til this passes. You've been such a super giver. Lots of love, ma

PinkGirl · 10-25-2007, 08:14 AM

Hi Believe
I thought of more of the stuff that happened to me on A/C.
It was difficult to eat anything (nausea) so I had boxes of
soda crackers (the kind you put in soup) all over the house.
I also bought a box of plastic cutlery. Everything tasted like
metal and the plastic utensils helped somewhat. I also found
a few things I could eat and I'm sure Ed will too. Lemon candies
helped with the yucky taste in my mouth.

The meds I took for nausea caused MAJOR constipation. I think
there should be another word for it because it was MORE than
constipation. I started the laxatives the day of the treatment and
kept taking it for 4 days - the same length of time that I took the
super-duper anti-nausea meds. Talk to your chemo nurse about that.
The stuff my chemo nurse gave me was more of a stool softener than a laxative.

I also rinsed my mouth with warm salt water 3 or 4 times a day. I
got mouth sores but they were minimal. A/C wiped out my white cells way
more than the taxol did. I had to stay home most of the time and was put
on anti-biotics . I had one treatment postponed by one week
because my blood was too low. And I had major fatigue. My hair fell out
about 3 weeks after the first treatment. Other than that, it was okay

Good luck.

hutchibk · 10-25-2007, 10:29 AM

I preferred warm salt water rinse, too, Pink... I developed an aversion to the taste of Biotene. I LOVED it at first, but then taste buds as well as scent glands changed (temporarily while in treatment) and Biotene fell out of favor. But salt water was a very worthy replacement.

jones7676 · 10-25-2007, 11:07 AM

I was sorry to hear your bad news. I will just continue to be optimistic and say that they did not pick the right treatment. I hope the AC kicks butt and that your next post tells us that it worked well. You and Ed will be in my thoughts.....positive thoughts!

Andrea Barnett Budin · 10-25-2007, 12:25 PM

-- they'll poison your minds and impact your outcome!

Oh Marie and Ed!! I read the bad news and I embraced the good within it. No organs involved. Brain mets no progression. Great advice from our Sisters. I remember how important it is to stay ahead of the nausea -- not to wait till you feel horrid (like w/migraines). Catch it before it takes hold. My onc and chemo nurses told me at the first sign of queasiness to take Zofran. It worked miraculously for me. That was my big gun. For milder general queasy feeling I took Phenergan. That didn't wipe me out but controlled the problem. I never threw up. I lost 33 lbs, which sounds good now, but I don't recommend the Adriamycin diet. So make it your business to eat or drink calories! A hand full of nuts. Smoothies. Whatever you can tolerate -- 8 X a day. That's your job! A great contribution to HEALING. Try not to focus on hating the cancer but rather on stomping the life out of it, shrinking it into oblivion!

I drink 10 glasses of water every single day of my life. Started w/Adriamycin in '95 and am sticking with the program! Keeps you well hydrated, kidneys functioning, flushes out the toxins and makes your skin less dry, flaky, itchy. Ice chips or whatever during tx so no mouth sores. Saltines or as Pink says those little soup crackers, help absorb toxins I was told. I carried them wherever I went. That and a huge bottle of water.

Pain meds when needed. DO NOT BE A HERO. They don't give out medals for toughing out pain. There is no need to suffer. Anti-depressant or Ativan (anti-anxiety) to keep your morale boosted and yourself in good fighting Spirit!

Hug each other daily. Do not waste a single day without laughing! Watch silly movies. Love and cherish each day and one another generously.

I believe you will find YOUR perfect recipe for success. I wish you had already found it. But, I BELIEVE it exists. When one combination doesn't work, move right along till you find the magic bullet with *your* name on it! Hold on to each other and to that truth, Marie and Ed. THOSE WHO DWELL IN YES ARE THE SURVIVORS. Do not give in. Do not give up. Cancer cannot touch your Soul. Let it guide you through this storm. You are in my thoughts and prayers. I will ramp up my torrent of prayers for you to help speed the process. Dwell in YES... I know how discouraged and disheartened you must feel right now, but do your best to shake it off and reach for the awareness that IF ONE PERSON HAS SURVIVED YOUR KIND OF CANCER -- SO CAN YOU! Focus on that. May it give you strength. May the love of all of us give you courage. God bless you for the grace and compassion you live your lives with. And may it be returned to you tenfold!!!!!!!!!!

MUCH LOVE AND MANY HUGS TO YOU BOTH,
Andi

Vanessa · 10-25-2007, 09:58 PM

I am so sorry to hear that you did not get the news you wanted. I hate this cancer rollarcoaster ride. I will continue to keep you both in my prayers until Ed reaches NED. Best wishes and hang in there. I don't have any advice about ac, because I did not get that treatment. Again, I am sending healing thoughts your way.

Sheila · 10-26-2007, 06:15 AM

Dear Marie
My heart goes out to you and Ed...we must accept the bad with the good, and there is good news in your post. You have received half a miracle, now need AC to get the rest. Just a week ago when I was getting chemo, the lady next to me was getting AC...she said sucking on a fruit flavored popsicle while receiving the Adriamycin helped get rid of the taste and prevented mouth sores. She also said that the first 2 treatments were not bad, but the last 2 were worse...probably an accumulative thing. Take good care of Ed on this new journey...my prayers are with you that he will recover from this new treatment with the other half a miracle.

Patrice · 10-26-2007, 06:26 AM

Marie, I'm so sorry that you and Ed have to experience this damn roller coaster ride and trusting/praying that this new chemo will work.

I experienced a lot of nausea with AC for this first two cycles and then went to an acupuncturist (who had experiencing dealing with this for cancer patients) to help with it for the last two. It helped so much that I wished I had gone BEFORE I started treatment.

All my best,
Patrice