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Finally got the comparrisons on the Pet and MRI

camul's picture
Posts: 2541
Joined: Dec 2010

This has been a long month since stopping chemo. Yellowstone was wonderful, the fires started the day we were there and it was so clear. 2 days later we drove over the back side of the Tetons to a wall of smoke in Jackson Hole. The wind shifted and by noon it was clear. There was a lake about 8 miles from the cabin and we caught fish everyday. No internet or tv, just great relaxing time with my family.

I have changed my diet to try and naturally strengthen my immune system. I have lost 5lbs, and my numbers have come up some. Cut out dairy except for nonfat on cereal, most sugar, wheat, and low meat. Mostly veges and fresh fruit. Still working on the Diet Pepsi, this is a hard one, I cut back. At this point it is too feel better so I don't say I will never eat something again!

I have also joined a support group and there are all kinds of cancer survivors, those of us who are active, other stage iv's, one stage iv bc who refused chemo from the get go and is still doing well. A really supportive group. I fought going, but am so glad that I joined. It really is great being with others who are in the same boat and are staying upbeat!

Saw MO today. and got the comparison results, considerable growth in the tumors in my hips, spine and tailbone. I expected it although I was still hoping that the tumors were stable. Also tumor activity in the ribs/connective tissue. I was not devastated by the news as I saw the pain dr on Monday and he said there was growth. I went with no expectations today.

Good news is my numbers are back up and he is giving me the option of either doing another round of an oral chemo combo Afinitor and Exemestane, or Lapatinih which is also oral but is a stronger Herceptin. It will be one or the other. I will let him know what I decide. He is hoping it will slow down the growth. Has anyone heard of it?

I was surprised after being told when he stopped the Navelbine that my immune system was so compramised, to go home and nest! My Neu has come up in the last 6 weeks and no infections, he believes this chemo combo may be tolerable to my system with less side effects. I should still have quality of life while on it.

I have been on so much chemo and this bi**h of a beast has just not given me a break. It is a roller coaster ride, but I am so thankful that I am still here and living, but it sure has not been an easy ride.

Sorry it is long,

Posts: 2515
Joined: May 2009

That's all we can do...keep on keeping on.........we're still here....do what ever gets you through the day! I wish you had gotten better news but as I say, it is what it is.....we can't change anything....we do what we feel is best for ourselves...congrats on the 5 lb weight loss....and here I am, trying to pack on the pounds...we're all so different in this battle.....

Will continue the prayers for you...
Big hugs, Nancy

New Flower
Posts: 4299
Joined: Aug 2009

Hi Carol
Sorry that bi** is still very active. Oral is easier than IV. Personally I have very high hopes for Afinitor
Please keep fighting

2Floridiansisters's picture
Posts: 382
Joined: May 2010

I'm one of those people that isn't very good with words, I try but sometimes it comes out all jumbled. I just want you to know I'm wishing you all the best.

camul's picture
Posts: 2541
Joined: Dec 2010

I have the same feeling that it is what it is, but sometimes what it is becomes really difficult. I am still dropping the weight, but a lot of it is from the edema, but I am sure changing my diet has helped.

The thought of another round of chemo is hard. I know it is the only chance, but this is the first time in going almost 2 years not to be nauseated, but the trade off may be time. Still haven't given up the hope that my tumors may be responsive to one of these chemos.

Glad you are doing well.

debi.18's picture
Posts: 850
Joined: Jun 2011

Glad you had a good time and you had some good news with you numbers. You are in my thoughts and prayers each and every day! Your new support group sounds very positive. Happy you found them.

Love, Hugs & Prayers

jnl's picture
Posts: 3873
Joined: May 2009

Sounds like a great time Carol and I am so glad you could go. Praying for you!

Love, Leeza

CypressCynthia's picture
Posts: 4014
Joined: Oct 2009

I can't really advise, but I just wanted to say that I am so sorry to hear about your scans. My onc mentioned afinitor and exemastane if my current treatment fails, but I really don't know about lapatinib and, of course, I don't know all of your tumor's particulars. But I wanted to say that I am praying for you and sending big (((hugs)))

camul's picture
Posts: 2541
Joined: Dec 2010

I think we are getting to the current end of options, just keep hoping the tumors will be responsive... Thanks for the prayers and hugs, and of course they go right back out to everyone here, keep thinking maybe there will be another one if this one does not work out, just not ready to give it up!


salls41's picture
Posts: 340
Joined: Apr 2012

I just don't think I could be as strong as you! I hope and pray for this to be your miracle. Keep up your wonderful urge to continue to fight!

lynn1950's picture
Posts: 2574
Joined: Jun 2008

Carol, good to hear from you. Ready and willing to fight, right on! xoxoxox Lynn

1surfermom's picture
Posts: 366
Joined: Mar 2009

Hi Carol

I took Lapatinib (tykerb) as part of a clinical trial in 2009. The side effects were not that bad. I tolerated it very well (the hardest part for me was the timing it had to be taken on an empty stomach and at the same time each day).The only side effect I had was that my fingerprints faded ( crazy huh?). I hope that it will be that easy for you if you have any other questions feel free to PM me. Love Surf

epark's picture
Posts: 339
Joined: Aug 2011

Thinking of you always....whatever you decide your pink sisters are here for you....

Lots and lots of love

camul's picture
Posts: 2541
Joined: Dec 2010

After reading about the chemo combo in Cure. I believe that this is my best option with resistant tumors. I am afraid of getting so rundown again and feeling shitty all of the time. However, I cant let the beast have it's way! I was stressing over the decision, which now seems rather silly, when the alternative to treatment is way too permanent, so once again I will do what I have to do in the hope of being here when a cure is found.

Thanks for all the prayers and positive encouragement. It seems like there wouldn't even be a question as to doing more chemo, sometimes I can't even explain it to myself. I want to live so bad, yet, the thought of feeling as tired and run down again like I did the last few months of chemo, and then finding that it did not stop the growth and I was not stable again, really took a mental/emotional toll on me. And now without chemo I am not nauseated or nearly as worn out. I not only want to do things, but actually have felt well enough to enjoy life. So I was weighing quality over quantity.

But I want it all, quantity with quality as well as hope, and without treatment I have no hope of getting this.

aisling8's picture
Posts: 1618
Joined: Feb 2010

you want it all: quality AND quantity. As long as there is hope, and there is, then anything's possible.

I can't believe the CSN censor let you get away with the word shi$$y in your post!!

Sending lots of positive energy zooming your way.


Pinky68's picture
Posts: 206
Joined: Jul 2012

I'm glad you will be starting that new chemo chombo..I love and greatly appreciate the strenght you have, inside and out! Such a good mom and example to your boys with your Never Quit nature about you!! Thanks for being who you are!

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