Monday, January 4, 2010

a post for Rajiv

I don't know anyone else on R7112, so I am glad you found me through my blog. I just completed the fifth cycle. I take a daily dose of 1270mg for 10 days, and then rest for 18. Did you start the trial after me? My first cycle was terrible but the last one did not feel like torture. So the good news is that it eventually gets better.
I have the same side effects you talked about: GI track discomfort, nausea, lack of appetite and taste changes.
My secret weapon to fight nausea and taste changes is ginger (like the ginger slices served with sushi in Japanese restaurants). Got Hope, a friend I made through this blog, gave me this precious advice. I eat it with every meal and also in between meals.
The other trick is to avoid having an empty stomach. When I don't eat or drink not even the anti-nausea prescribed by my doctor (Decadron, Kytril and Ativan, half an hour before taking the drug) works.
On the last cycle I discovered the perfect snack: shrimp balls and squid balls. I buy them frozen in Asian supermarkets and boil them and eat them with soy sauce. It was more practical than the expensive sea-urchin sushi that I craved on the previous cycle. On another chemo, all I wanted to eat was anchovies...
Oh no, I am telling you to eat anchovies when I hate anchovies! What I am trying to say is that foods with a strong flavor work better for me, because at least I can have a taste sensation when everything else tastes bland.
Rajiv, Good Luck with the trial and keep in touch.


Änketänkaren said...

My husband, now 62, was diagnosed for a retriperitoneal liposarcoma in january 2004. Since then he have had 4 surgeries with one surgery directly afterwards because of problems in the abdomen. They have removed stomach, a piece of pancreas, the spleen, one kidney and pieces of the intestines. On wednesday next week they will open him again and take away three tumors in Stockholm (Sweden).
I have read your blog some times and it gives me hope that he will survive once again. For me it is interesting to read about people with the same problems. Thank you for sharing your life with people around the world. Have a good tim

Elsa D. said...

Birgitta, Thank you for your kind words. I started this blog hoping that my story could help a few. It is an honor to read that I am giving you hope. Your husband's surgeries sound a lot like mine... Good luck on Wednesday. Everything will be alright. You´ll see.

Ring said...

U're my hero!

Daria said...

I've heard Ginger works ... tho I've never tried it.

Rajiv said...


Thank you so much for thinking of me.

I started R7112 after you - I finished my first ever 10 day cycle in late December (although I could not keep the last two days down). I am now in the rest period until next weekend.

I am quite slim, but my dosage was 2760 mg. The first 8 days were tolerable with adavan and zofran. I think the mistake i made was that I did not take the anti-nausea pills on day 9, and then the situation got ahead of me.

I was taking the tablets at lunchtime. I was taking them with rice and vegetables (and sometimes yoghurt) to try and "cushion" the impact. Perhaps I will try night time next time around so that I have at least two meals in me before I take the pills with a third.

For me the taste issues kicked in after I finished the 10 day course. I think its because of the decadron they gave me on the last couple of days. Ginger sounds like a great idea - I tried those Japanese ginger slices the day after I finished the 10 day cycle and definitely could taste them - but not much else!

Anyway, I have another 10 days to go and then will get a scan in mid-February. I'm hopeful that this will work. Although they were telling me that at some point after phase 1 they look at the genetic make up of participant tumors and only those without p53 mutations will stay on into phase 2 - I don't know whether I have that mutation or not, but it seems it may possibly impact the effectiveness?

Your blog gives me a lot of hope. My wife and I have been married for a short time, but we plan to have a family and continue to to great things in life, so it is good to see someone else who has taken that path.

Maybe our paths will cross at MSKCC?


Elsa D. said...

Rajiv, my next appt at MSKCC will be january 15th, next Friday. If you are there on that day, I hope we can meet. My Dr. is Mary Louise Keohan.

Rajiv said...

Interesting - Dr Keohan is also my doctor, and I am also seeing her on January 15th (before my next 10 day course)!

I will double check the time and let you know.

Elsa D. said...

Great! mine is at 11am

Rajiv said...

I just checked again and mine is at 8.45. Kavi (my wife) and I usually end up waiting an hour to 90 mins before we get in see Dr Keohan.

So I could catch up before your appointment on level 5 around 10.30, or could also meet afterwards - since I live in the city anyway and it is no trouble for me to stay in the area and read a book etc.

Elsa D. said...

Rajiv, I think we are on the same drug schedule, I am also starting another 10 day cycle on Sunday so I will be returning on Tuesday the 26th... I think I am arriving in the city around 10h20, if the train is not late.... I'll be at MSKCC around 10h45... If by any chance you are done early don't worry about me, we can always try to meet on Tuesday.
But I'll look for you on the 5th floor when I arrive!