Just started Tykerb/Xeloda and worried this combo won't work either :-(

LoriG · 01-01-2010, 09:44 AM

Happy New Year's Day to all!

I just wanted to introduce myself as a newbie to this group and hoping for some positive Tykerb/Xeloda stories as I am not feeling too optimistic that anything will get me to surgery at this point.

I was diagnosed with IBC in August of this year. I am 33 years old with a 4 year old son and 11 month old daughter. At diagnosis my staging scans were clean except a malignant axillary lymph node on the opposite side as my known cancer which either means I am stage IV or I have a second breast cancer on the left side. The contralateral lymph node is ER- while my primary is ER+. I have had 4 rounds of dose-dense A/C and 4 rounds of dose-dense Taxol with weekly herceptin. Although the color improved on my breast the skin changes and firmness never got better and in fact worsened over my last few taxol treatments. My breast MRI a few weeks ago showed no improvement from 3 months ago. Luckily my PET did not show cancer activity outside of the breast. The lymph nodes now *appear* normal. My local onc was recommending radiation, but I disagreed. I went down to MD Anderson in Houston last week for a second opinion and for them to take over managing and coordinating care with my local onc. I am now on 12 weeks of Tykerb and Xeloda (oral chemo) unless I don't respond to these agents either and then ????? what we do next. I need to get enough response to shrink the tumor in my breast so I can have surgery and radiation and hopefully, in the meantime, hold off major organ or further lymph node mets.

Any words of wisdom? Thank so much!

Faith in Him · 01-01-2010, 01:01 PM

I have done very well on Tykerb/Xeloda. I started with IDC and had a recurrence of IBC on the same breast. No other involvement. The Tykerb/Xeloda cleaned up the rash after three rounds and I haven't seen it since.

I hope you do well with this combo. It is good that there is not any organ involvement. Hold onto to that to help get you through.

Tonya

Ellie F · 01-02-2010, 12:07 PM

Hi Lori
I was diagnosed with IBC in January 2008. At the time there was some disagreement as to whether I actually had LABC.I had 4 xAC then mastectomy followed by 3 weeks of radiation. I commenced on herceptin (I am her 2 positive but ER negative) for a year. In Feb 2009 I had a recurrence to a contra-lateral lymph node. The rest of my scans were normal.I had the affected nodes surgically removed and then fter changing onc's I had 6 rounds of taxotere and herceptin and now am just back on herceptin. I have been told that if it comes back again I will either get T-DM1 or xeloda and lapatinib.I also refused radiation to my contra lateral axilla but will revisit this again in March.
Do you have a solid tumour? Mine was 4.5cms but others with IBC don't have a solid mass.
I feel optimistic that you will get a good response to your current combo. There was a small piece of research done here in England a couple of years ago which especially showed a good response to this combo in IBC.Unfortunately we are not able to have tykerb here as the government thinks it's to expensive however we can get it in trials (or if paid for privately)
Please let us know how it goes
Best wishes
Ellie

Rich66 · 01-02-2010, 02:30 PM

You might ask about her2/ER blockade to cover the known pathways:
http://her2support.org/vbulletin/sho...ight=crosstalk

You could also ask about adding metronomic Capecitabine (Xeloda) and Metformin.

LoriG · 01-02-2010, 07:39 PM

Thanks Tonya, Ellie, and Rich. I appreciate the responses. I think I am being a little impatient expecting immediate visual improvement of my IBC. I spoke to someone who noticed changes from day one on Tykerb/Xeloda which made me a bit paranoid.

Ellie- was a second primary breast cancer on the contralateral side considered for you? My contralteral lymph node is ER- as opposed to my ER+ known breast cancer side. My onc at MD Anderson is still treating me as though I have mets even though there is the possibility of bilateral breast cancer. Also, my entire breast is firm and indurated. My breast MRI and PET both show diffuse malignant enhancement. I was nursing at the time of diagnosis and when I weaned the entire thing became firm and hard and has never improved.

Thanks again, everyone!

Ellie F · 01-03-2010, 08:01 AM

Hi Lori
I was treated as if it was mets. The pathology showed the same disease ,that is her2 positive and ER/PR negative. I had a further mammogram and ultrasound which was negative but not a breast MRI.
When is your next appointment?
Ellie

yankeebikachic · 01-04-2010, 03:22 PM

Lori, try to be patient, as you can see, I have had great success with X/Ty and you can too! If you do a search on this site you will see many people have used it with outstanding results.
And please do not overlook the other areas of your life that need some attention. You need to eat healthfully, exercise, and reduce your stress! All of these things contribute in the fight against cancer.
Make time for yourself to beat this disease, and just try to be patient and give this combo a chance.
Beth

LoriG · 01-04-2010, 06:44 PM

Ellie- next appointment with loca onc about 1.5 weeks. See doc at MDA in 3 months.

Beth- thanks for the encouragement. My rational mind goes out the window occasionally! Can't beleive your onc told you not to worry about all those lymph nodes! Glad you fired him and ever happier you are doing well!

I am eating very healthy, lots of fruits/veggies and exercising. Of course I was already very healthy before cancer! lol. My issue is weight loss....I started 5'6 and 130 pounds and am now down to 110 pounds. Apparently I am one who loses weight with stess!

Thanks all!

Jackie07 · 01-05-2010, 10:38 PM

Lori,

Just saw this thread. I am wondering about your weight loss. You stated that you are eating very healthy, but you only listed fruits/veggies and exercising. What about proteins and carbrohydrates? 5'6 and 130 lb are not bad numbers for 'thin' people (I'm 5'7 and weighs around 123 lb.) But losing 20 lbs within 4, 5 months seems to be too much.

Could you talk to a dietician or a nurse about how to gain some weight? You stated that you lose weight with stress, are you worried about your cancer treatment? Certainly it is not easy to undergo cancer treatment while having to take care of 2 very young children. Can you get some outside help?

I'm glad you have an appointment scheduled at MD Anderson. Be sure to gain some weight back before you are headed to Houston. Try some deep breathing relaxation exercise (when the kids are in bed) every day - close your eyes and focus your eyes on your nose, then direct (imaginning, not really moving it)your nose toward your heart. Breath in, breath out...

yankeebikachic · 01-06-2010, 02:37 PM

You need to be your own best advocate for sure! And yes, please DO gain some weight. It takes some work, esp on some meds where you are running to the bathroom several times a day! I weigh 130 lbs, 5'1" and exercise lots and consider myself to be in pretty darn good shape so yes, eat more!
During my 1st round after diagnosis, I would lose anywhere from 5-8 lbs with each biweekly treatment. But by the end of the 2 week period, at weigh in for my next infusion, I would always gain the weight back. I had to really work at it, it was hard to do. And while on Ty/Xel. I swear, the food was going out faster than it was coming in! Sorry, but it was! I was eating a lot, I did not keep track thru all my weeks but I know for a fact I ate at or over 4,000 calories a day, and all healthy choices. But I knew my body needed fuel so I just kept eating.
Keep at it and make that weight gain top priority. You just have a high metabolism being made faster these days...so make something yummy for dinner with a big ol' splash of olive oil, maybe some pepper and curcumin in the mix too for added boost!

Beth

LoriG · 01-06-2010, 07:00 PM

Thanks for the advice, everyone! I am definitely trying to put some weight on and eating healthy but higher calorie stuff and good fats (not just fruits/veggies, promise!) I hate to complain when so many people can't lose weight, but it is tough to gain it right now especially while maintaining a healthy lifestyle! I did ask my oncologist about seeing a dietician and may pursue that if I lose any more weight.

How long were you all on tykerb before getting the rash or diarrhea?? I am on day 10 or so and other than the skin splitting on my fingers I am doing ok from a side effect stand point. Maybe it is still early? I know everyone is different.

yankeebikachic · 01-07-2010, 04:17 PM

Um, trips to the bathroom were instant although that was more of a problem with the xeloda. And cracks in the fingers are from both of them, with pain and burning from xeloda as well. I cover my hands with bag balm or other thick ointment and wear cotton gloves to bed which helps a bit. The cracks didn't start until after a few cycles of xeloda. I actually had to take 2 breaks because of the pain, but only 1 week and I was ready to get back to nuking cancer cells...
Beth

Karen Wheel · 02-13-2010, 10:54 AM

Well, I know that losing weight is something that happens when you eat veg and fruit (Her2 made me become a vegan) but .... if you read much on diet and beating cancer with food - almost all say that you have to eat a ton of veg and give up animal products ... ALL! I still have a tablespoon or so of grated parmesan on my whole wheat pasta (a good one for adding weight!) or whole wheat rice --- And I sometimes have a tiny bite of meat just to taste it - but for the most part I eat veg, beans, nuts and whole grains. I have lost almost 30 pounds (needed to lose it!) and keep losing a bit every month. It has been a year (this month) since my surgery - and I feel great actually. I miss the big steaks and meat - but I know I can't eat them and ward off the threat of cancer again in my life. I want to lessen my odds of the Her2 coming back. I do this by controlling the pH of my body (cancer can't grow in a pH neutral environment) so I struggle with trying to stay in neutral.
You can also try a non-hormone type of protein drink?

Also, I am reading a great book by a cancer nutritionist and Phd - he has a shake he puts together to help cancer fighters gain weight ---

Beating Cancer with Nutrition - by Patrick Quillin PhD, RD, CNS

Another good one is:
Cancer Battleplan Sourcebook - by David Frahm

And anything on Gerson. They are much more strict on the diet - but if I have any sort of cancer come back I would go on their diet - its really hard but I think it has a lot of merit in saving lives!

Also - someone on this site had a Herbal cure for the hand issues - think it was Henna or something like that it turned the hands redish but it really worked good, if I remember correctly - maybe you can search for it.

If you want more info (I have a ton!) send me an email to: wheelistic@yahoo.com

:-)
Live long -live strong!
Karen