Watch Out Cancer Xeloda/Tykerb comes!

[Odette]

Hi Sherry, Brenda, Carolyns, Flori, Lala and Bailey,

After a month delay I decided to start Xeloda tomorrow and add Tykerb in the evening if/when it comes! They promised to Fedex it on Friday.
I learned so much from your postings, I feel quite prepared. I feel so much better about this than just about a year ago when I was on A/C I had only my doctor to turn to - and back then I was too proud to call them...
The plan is that I would stay on 4 to 6 cycles of Xeloda and a year or possibly longer on Tykerb.

My only question right now: taking Tykerb at night still seems to work best for most of you?

Hope you all had a happy Mother's Day!

With hugs,
Odette

[hutchibk]

Hi Odette - welcome to the club. Yippee Tykerb/Xeloda! I have a soft spot in my heart for this combo, and high expectations. My significant other wants to name any new pets we might get Tykerb and Xeloda! LOL - he's a kook!

I am still just rocking along on Xeloda - no side effects at all.

I took my very first Tykerb last night at bed time. NOTHING HAPPENED! I think it might have made me a little restless, but that is it. Oh, and a little acid reflux burn.

Since I am not an early riser, it would be lunch time by the time I got all of my meds in if I also took Tykerb in the AM. I usually eat b-fast around 10:00A, and once a week I have to take the Fosamax 30 min before b-fast. Then, midway through b-fast I take AM vitamins and about 15-30 min after b-fast I take Xeloda. Then around 7/8:00P I eat dinner, take vitamins halfway through, and then Xeloda. Then I wait at least 2 hours and take Tykerb before I go to bed...

I have never had so much structure in my life! But I am figuring it out...

[Andi]

Structure - boy isn't that the truth! I feel like a baby on a schedule. I eat breakfast and take my am Xeloda between 7-8 am. I am on a trial for hand/foot syndrome and need to put the cream on my palms and soles so I do that after I bathe in the morning. At noon, I take the B6 for the trial, my clonidine for hot flashes and a calcium. I eat my evening meal so that I can take my evening Xeloda around 7-7:30, the take my Tykerb between 9-9:30 and do the cream thing to my palms and soles again. So far this routine is working pretty well for me. I am more fatiqued on this than any of the other chemos I have taken. I have had 3 times I needed the imodium, but then things stabilize after that. The last couple of days I have had a few zits on my chin. Tomorrow I start the week off of the Xeloda, so I am curious to see how I feel then.

[Odette]

Hi Brenda,

it was swell to get a letter from you when I got up before starting X.
I had extra early breakfast then I took my 3 500mg pills.
I'm going to run out to get the B-6 and what you recommended the Bentonite Clay and the Carob powder. How about chocolate? Could that be a natural remedy for the divas? (I remember my Grandmother used to blame chocolate for constipation in any of us grandchildren, hmm)

I'll just try to cook and organize things today and wait for the Fedex guy.
Oh and of course confer with my social worker about coverage of X.

Your lighthearted approach encourages me too.

I can picture you a sprightly octogenarian with two beautiful cats patrolling the property. Your little great grandson asking: Gramama why are the cats called Tykerb and Xeloda? You would reply with a story about the twin champions (dispatched by you the queen) who conquered evil Canceribaldus.

Wishing you and all of you brave queen and princess warriors a great day,

Odette

[Carolyns]

Hi Odette,

I am glad to hear that you are doing well.

I continue to take Tykerb in the morning. I wake up one hour early and take the pills with a large bottle of water. Then I go back to sleep. I always love turning the alarm clock off and going back to sleep...it is a guilty pleasure for me.

So far, I just go to the bathroom a couple of times before 9:00am and then I am done with that part of the day. Similar to life before Tykerb only one extra trip to the bathroom in the morning. I took my 5th dose today.

Good luck and keep us posted.

Love, Hope, and Peace,

Carolyn

[Shell]

When I was on the xeloda/tykerb trial, I took tykerb in the a.m. Now I take it at night, and usually just have one episode of diarhhea in the morning. I prefer it at night...


Regards,

[hutchibk]

HI all - and Odette, thanks for the story! I like to picture us all as octogenarians! For me that means 35 more years as a Diarrhea Diva, always with two cats patrolling the yard. Maybe instead of calling the cats Tykerb and Xeloda, I will rename Ty/Xel after my cats... Milo and Dasher! Hmmm, I like that.

Speaking of which, I finally had to take the bentonite clay around lunchtime today due to the side effects of Milo. Will let you know how it works...

(1 TBSP shaken well in a couple oz. of water or mixed well in applesauce... followed by LOTS of water all day long. Another dose of Bclay may be taken later in the day if needed.... we shall see)

[hutchibk]

CarloynS - I am a professional sleeper too! Hitting snooze is my fav guilty pleasure too. That's when I get my best sleep I think!

[Odette]

Hi Brenda, Andi, Carolyns, Shell,

Thank you for your description of your routines it is very helpful as I've never been good with schedules. It makes sense to put the baby on a set schedule. It might just be my time to learn to follow directions.

My first day on Xeloda. Just a touch of queezy feeling.
I think I'll try taking Tykerb tonight, but if it messes with my sleep it'll get bumped to the morning. I'll join the snooze alarm club then.

Comparing it to my last summer's chemo, I miss my nice nurse, but I see it doesn't hit you suddenly as a regular chemo would, so that is much better.
I'll see my oncologist on Friday, if he doesn't offer it, should I ask for a blood test? I don't even know is Xeloda hard on your counts? Do you girls get regular CBC-s?

Hope you have a great OFF week, Andy!

Fondly,

Odette

Ps: I really meant nanogenarians!

[SoCalGal]

Hi Odette,
Glad to hear you finally got your meds. I tried tykerb at night and think I do better taking it in the morning. If I take it at night, then there is no food in me for most of that time and I was waking up with chronic nausea. It really has taken about a month and a half for my system to settle down - so don't get discouraged (like me) when the side effects occur with no real rhyme or reason.

I get up around 7:30AM - have a cup of coffee - yummmm. Take my Tykerb and then shower, get dressed, make bed, etc. By then the hour has passed and I eat breakfast. After breakfast, I take 2 (500mg) xeloda.

If I feel ANY nausea, I take 1/4 of a 1 mg ativan. I also got those sea-sickness bands and have been wearing them. They seem to help - it's probably just the placebo effect. I am so mental anyway:).

I have also added 1 immodium at bedtime, late at night, so I don't wake with the runs any longer.

Just to confuse all things, I also met with a Dr Kenneth Conklin at UCLA who put me on a vitamin and supplement program that includes altering my diet. No dairy (mooo) No gluten - meaning NO grains. No sugar. The remarkable part is I was having trouble finding foods to eat that didn't make me more nauseas, and now I am eating fruit, fish and vegetables and feeling much better. I had a pretty healthy diet before, so this diet isn't radical for me - just one more thing to add to my day. Hopefully I'll get better at it all as things go along.

I get my blood done during the week off xeloda. Yes, your counts can drop so get it checked. Okay - that's enough for one night. Stay strong! Hugs and blessings...Flori

[Odette]

Dear Flori,

It sounds like you figured out your schedule very well!

I'm also glad that you are down to 1000mg of Xeloda morning and night hopefully you will be fine w/o any major side effects but the combo still be effective.
I tried the Tykerb at night at first, but it gives me acid reflux so I might just switch to the morning. I'll give it a couple more days though.

Thank you for sharing about the interesting diet Dr Kenneth Conklin has you on! No pasta, no bread, no whole wheat either? How about oatmeal? Cornbread? I eat a cup of Irish oatmeal for breakfast every day. The macrobiotic diet is not allowing rolled oats. I used to eat cheese and put milk in my coffee but my diet does not include dairy either. How about rice? I eat short grain brown (curry) rice almost every day with usually two different kinds of vegetables and either tofu, cold-water fish or lentils or beans for protein. The diet has been the only enjoyable part of this cancer campaign for me. I prefer avoiding the use of 'journey'. Journey sounds a lot like there is something good around the corner.

Do you think his diet prescription has anything to do with omega 3 and omega 6 ratios? Do you know if he writes articles where he describes the rationale of his recommendations? I would be interested reading about it.

I’m glad you have your ativan when you need it, no one wanted to prescribe it for me yet, they just offered it before I was getting my A/C but then I refused. So far I’m OK, of course it’s only the second day! I’m just happy to have finally started before something acted up for me.

Enjoy the beautiful spring,
It is almost too warm here now but we’ll probably get some soothing rain tonight.

Sending blasting away those mets vibes your way,
Fondly,

Odette

[SoCalGal]

Hi Odette,
I am on (4) xeloda a day - 2 in the am and 2 in the pm. Same as the clinical trial. My mind is crazed and all day I thought it was Friday...chemo brain FOR SURE.

Dr. Conklin is all about properly balancing omega 3 and 6's. I don't know how to find what he's published but I would be happy to fax you all the materials he gave me at my 3 hour consult. I saw him again today for accupuncture. He is a very kind man and I think he has some sound ideas for optimizing our immune systems so our bodies will do their job and get rid of the cancer cells. Here's what I could find on line.

Kenneth Conklin, MD, PhD, is a Clinical Professor at the David Geffen School of Medicine at UCLA. He develops nutritional supplement regimens and diet programs for individuals undergoing conventional cancer therapies, and provides acupuncture treatments for the relief of common side effects of chemotherapy and radiation therapy. He has written extensively about the use of antioxidant supplement during cancer chemotherapy.


KENNETH CONKLIN, M.D. http://www.hmieducation.com/images/faculty/HMI304web.jpg Dr. Conklin is a Clinical Professor of Anesthesiology at the David Geffen
School of Medicine at UCLA. He practices integrative oncology, integrating
medical acupuncture, clinical nutrition, and herbal medicine with
conventional cancer therapies. Dr. Conklin received his Ph.D in Pharmacology from the University of Hawaii
in 1971 and his M.D. from UCLA in 1974.

Following the completion of an anesthesiology residency in 1977, he joined the faculty of the Department of Anesthesiology at UCLA where he served as the Director of Obstetric Anesthesia until 1997. He completed the Medical Acupuncture for Physicians course in 1997 and began his practice of integrative oncology at UCLA that year. Dr. Conklin has published extensively. His most recent review articles pertain to the use of acupuncture for the cancer patient and the use of nutritional supplements during chemotherapy. Dr. Conklin serves as a reviewer for the journal “Nutrition and Cancer” and as a consultant to the National Center for Complementary and Alternative Medicine (NCCAM).

[hutchibk]

hmmm - if I come to LA next month to visit some friends, I may have to try and get an appt to see him. He sounds interesting. I would love to read some of the info that he sent home with you, Flori...