Getting Discouraged

[Muldoonmom]

Hi All,
I've been up and down with side effects since I started Tykerb in May. The diarrhea seemed better for a while and then it hit me like a ton of bricks last Sunday night. It was so bad that I had to cancel my flight home on Monday (I was visiting my daughter and family in Buffalo) and reschedule for the next day. When I weighed myself this morning, I have lost another 5 lbs. That makes a total of 15 lbs since I started tykerb and 25 lbs since last January when I had the pleuradesis. (155 to 130) My doc didn't want me to lose anymore weight when I went below 140. He's not going to be happy. I look a lot better without the extra lbs. but I'm afraid to lose anymore weight.
I stopped the tykerb on Sunday just to give myself a break. Today I feel much better and can eat again. But I'm beginning to feel really discouraged. If I can't get the diarrhea and loss of appetite under control, I'm not sure I can continue. I haven't had any scans yet to check progression or lack thereof... but I'm pretty sure the doc is going to order a ct next week when I see him.
Just venting to you who understand my dilemma.
UGH!

[Esther]

Debbie if you are on a full dosage of 5 pills a day, ask your onc about reducing it to 4 or even 3 pills a day. The side effects are greatly diminished on a lower dosage.

I still had great results on a dosage of 3 pills a day. Maybe it will work for you? It's worth considering.

[GemmaG]

Debbie, we have the same dilemma. I've lost 5 lbs this week and I can't afford to lose more. I only weigh 106 now and I'm 5'6 and I don't look good at all being so skinny :-(
When I stopped TYKERB/Xeloda for a week, i was able to eat a lot and have gained few pounds. I had my dosing reduced to 3 pills a day and still diarrhea kept on going and going....

Hugs,
G

[Shell]

Debbie-

I was the same way with the diarhhea and the losing weight. I finally stopped the tykerb, because it didn't seem to work for me, and things are finally starting to get under control again... Good luck with it, and definitely explore getting a reduced dosage...

Regards,

[Muldoonmom]

Thanks, Ladies, for your dosage advice. I did reduce from 5 to 4 pills in May. When I see the doc next week, I'll ask him about going to 3 pills a day. Maybe that will work.
It feels so good to be able to eat again! I think I've already gained back 2 to 3 lbs.
This is such a shame - I was so looking forward to Tykerb and never dreamed that I'd have such trouble taking it. I've been on so many chemos over the past 10 years and this is by far the worst! But I'm not giving up yet.
Thanks again and I'll keep you posted on my progress!

[Carolyns]

Hi Debbie,

How are you doing? I hope that you are feeling better and that treatment is getting easier. I wanted to let you know that I had my first PET scan since being on Tykerb and Herceptin (Zometa monthly) and the area of the spine that had the increased activity in the last scans (while on Faslodex and Herceptin) is no longer lighting up. So, the PET looks good and blood work CA 15-3 and CEA are now within normal range. I did not get the Tykerb rash. So far so good for me and hoping this holds for a while.

Love, Hope, Peace,

Carolyn

[hutchibk]

I eat a pretty staunch, clean and fresh diet. I swear that it makes all the difference in the world with the diarrhea. Last week I did something I NEVER EVER do. I drank 2 Cokes and ate 1/2 a bag of bbq chips one afternoon. (was at a teenager's b-day party) and for the next 36 hours I was miserable with diarrhea. I took one immodium and immediately deferred to my BRAT diet and my normal eating habits (NO junk, no sodas) and I was back to normal in 36 hours. I learned a valuable lesson. I can't afford to stray from my clean livin!

[SoCalGal]

Hi Debbie,
I agree w/Brenda. I eat dairy free, gluten free and when I was on TY/X regime it helped A LOT. Also, I am using a bunch of daily supplements, including one called intestime. This is all under a doc's care at ucla. Plus acupuncture. After the first month, I could better handle the side effects - either no immodium or none till day 9 - pretty good. Also, my weight was stable on this diet. I am also on the thin side and don't need to loose any more (5-7" 120)

Make sure that you are taking the tykerb on an EMPTY stomach and are waiting ONE HOUR to eat.

Okay - gotta go - I am so nauseas right now from my monday drip...
hang in there. xo Flori