All about Xeloda

leftfootforward

so many have had to stop this drug lately. I wish you all well and hope that the next treatment is kind to all of you and that the progression is stopped.

mike3121

Results back from my wife's biopsy. Here Estrogen positive changed and she is now triple negative with some small mets to the spine. She starts Xeloda next week then Zometa bone strengthener when cleared by a dentist.

Does Xeloda work well against triple negative?

Bestbird

Mike, I am sorry to hear that your wife will be changing therapies. Below from my MBC Guide is some information about chemo and TNBC. You (and others) are welcome to request a free copy of "The Insider's Guide to Metastatic Breast cancer" by visiting the top of this page: https://community.breastcancer.org/forum/8/topics/831507?page=3#idx_73

Halaven Chemotherapy for TNBC: Relative to existing FDA-approved chemotherapy, in a Phase III multicenter study, women with metastatic TNBC had a more significant response to treatment with Halaven (Eribulin) versus Xeloda.Additional Phase III trials substantiated the effectiveness of Halaven over standard treatment.The two studies showed an overall improvement in survival of 5 months for metastatic breast cancer patients with TNBC.

From: http://curetoday.com/index.cfm/fuseaction/blog.showIndex/guest/2012/12/9/A-recap-of-triplenegative-breast-cancer-research-from-San-Antonio and http://www.sciencedaily.com/releases/2014/11/141102212054.htm

Platinum Chemotherapy (such as Carboplatin and Cisplatin) for TNBC: Many people with TNBC may respond well to platinum chemotherapy drugs.TNBC patients with Homologous Recombination–Deficient (HRD) tumors, which have lost the ability to repair double-stranded DNA breaks, may possibly have a more favorable response to DNA-damaging drugs such as platinum agents and PARP (poly ADP-ribose polymerase) inhibitors. Furthermore, the presence of tumor infiltrating lymphocytes (TILs), a type of white blood cell, ahead of treatment may help predict a favorable response to platinum-based chemotherapy in women with triple-negative breast cancer From: http://www.medicalnewstoday.com/releases/270261.php and http://www.medicalnewstoday.com/releases/276870.php and http://www.ascopost.com/issues/january-25-2016/homologous-recombination-deficiency-score-correlated-with-response-to-platinum-in-breast-cancer/

Bestbird

Please read this if you will be starting Xeloda:

Xeloda/5FU and DPD Deficiency: Before taking Xeloda or 5-FU/fluorouracil (from which Xeloda is derived) patients should consider getting tested for "DPD Deficiency." DPD stands for dihydropyrimidine dehydrogenase, which is an enzyme the body makes that helps to process thymine and uracil, which make up part of the structure of our genes. DPD also helps to break down Xeloda and 5-FU. If a patient has low levels (a deficiency) of DPD, they will be more likely to have severe side effects from these chemotherapy drugs because with low or no DPD, the chemotherapy drug builds up in the body and cause severe to fatal side effects.Testing for DPD deficiency usually is done via genetic testing, which should be discussed with one's Medical Oncologist since approximately 3% - 6% of the population has at least a partial DPD deficiency.From: http://www.cancerresearchuk.org/about-cancer/cancers-in-general/cancer-questions/dpd-deficiency-and-fluorouracil

mike3121

Bestbird, this was so helpful. My wife has a problem with medicines. She did have gene testing and was not BRACA. I'll ask about this DPD testing, maybe it was already done. Thanks again.

MikeW.

letmywifelive

mike,

Since your wife completely lost her EP/PR positive status have you been considering immunotherapy ? I think you should definitely consider it since immunotherapy treatments are showing great results with TNBC.

letmywifelive

Susan - very sorry to hear about your progression and wish Xeloda had given you some more time. Have you been considering clinical trials ? My wife's MO said the other day that trials always look for clinically healthy patients. I found that interesting and led me to believe that one needs to pursue trials early on and not late in the game.

susan_02143

We reviewed the available trials with the research nurse and concluded that none were suitable for me. My doctor is convinced that taxol is the silver bullet and was not interested in a trial that didn't have a high likelihood of success for me. Thanks for your thoughts on this.

letmywifelive

Rgc77 - I salute your spirit that you had the energy to write back to all of us here after such an ordeal. Glad that you are slowly improving now.

letmywifelive

Kimberly,

Sorry to know that Xeloda stopped working for you but you are off to a great treatment plan that has given benefit to a lot of people.

mike3121

My wife's oncologist has all but ruled out any trials as my wife's condition is the most complex of any the tumor board has ever seen. He said the people running these trials want a simple cancer history. immunotherapy would be great if it were FDA approved. Too bad my wife is deadly allergic to taxol because that takes another weapon out of her treatment.

Lita57

Just had to share....finally got my shirt. If we can't make light of it a little, we might as well shoot ourselves now.

JFL

Mike, I am also "deathly" allergic to taxol. Went into severe anaphylaxis within seconds of starting it. However, Taxotere and Abraxane, which are relatives are still available. The issue with Taxol is that people are allergic to the binding agent - cremaphor. The other two use different binding agents - Polysorbate 80 for Taxotere and I don't know what for Abraxane. I have taken Taxotere 10 years ago and 2 years ago with no problems - and no need to even take it with normal premeds like steroids and benadryl.

mike3121

JFL, Taxotere, wow, I see ads on the TV for lawyers class action suing due to permanent hair loss. Sounds like scary stuff to me. Thanks for the info on taxol. My wife had a full on episode while in the infusion room, crash cart, people running, the whole nine yards.

Lita57

Starting my next Xeloda cycle tomorrow. Wish I could have enjoyed my week off instead of nursing my rotator cuff. We finally got the Walking Dead "Lucille" bat that dh ordered last year for Christmas. They were so back ordered that they told us we wouldn't get it until March.

This goes out to all the Walking Dead fans: We're fighting cancer with Lucille.

momallthetime

Lita you are just the best!! I wait for your posts, you could turn my day just like this! You know I love your tshirt, da best.

Kessala one way to look at it, at least you now know what you have to deal with. Lots of ladies did well in the other combo. Best wishes. Please do check in.

Believe51 that really sucks. How long will you be gone for? Xeloda will be here when you come back.

Katchingcolor you will have Kessala's company. WOW. Go figure, some people do so well and some not.

Peacockgirl that's quite a dose you take? Would you lower the dose maybe to ease on the SE's? It could help.

Susan that's so sad…not fair!They gotta find something good.

Rgc you got a secret admirer, how sweet. So now they changing your plan? Hmm can only wish you the best.

Mike it does sound like a gr8 thought what letmywifel mentioned. And the question would be why don't they just do this DPD testing so people don't waste their time literally.

Letmywifeli as I mentioned in the liver thread, I am wondering the same thing about the hike in the numbers of the ALP? I wish someone could explain it to us. I am very concerned, because it has been 3 weeks in a row, and CA15.3 also has been going up, and platelets are very low, and the numbers are wacked up, so...does it all mean something. Yes, Pet/CT this week, I just like to be prepared. I don't know if she could stand the taxol, and platins, she was on all that already, i don't even know what the rules are.

AmyQ

Hi Ladies,

I am in shock - my Onc just called and said the Xeloda is working!!! Spots on my liver are gone and my bone mets greatly improved. I'll find out more on Wednesday when I see her next but my heart is pounding I am so surprised. I truly expected to be moving onto a new plan or no plan at all and let nature take it's course as I wrote about in February. Happy dance for sure!

So here's to all of you who are just starting X or have been on it a while - there is hope, just like the lady I heard about who's been on it for 11 years. I hope I am her!

Peacockgirl - I started on 4,000 mg and had horrendous hand and foot syndrome with a side of acne, mouth sores, lip sores and loss of a lot of body hair - my onc lowered my dose to 3,000 mg which has greatly improved my quality of life - HF syndrome still an issue but not as awful as it was. Other SE virtually gone so there is successful treatment even on lower dosage so I recommend asking. There are a couple of studies out there that show the efficacy of 3,000 mg is as good as 4,000mg. Good luck to you and talk to your doc as soon as you can.

Amy

Kaption

AmyQ- VERY great news for sure! Hope for us all! How long have you been on Xeloda?

momallthetime

Amy that's fantastic. It was so hard for you. So glad. Happy dance.

AmyQ

Kaption, I started Xeloda mid-December so this was my first scan - I almost cannot believe it - I've had sucky news for close to two years with nothing working, then finally, this IS working. I wish no pray it works for all of you too!

Amy

Kaption

Hoping for all of us. I just started the first of February. Did a 7/7 now on 14/ 7. Then I'll do rads for brain met, just found. So, yes- need for this stuff to work!!

Husband11

AmyQ, I am very happy for you!

stagefree

yep! Still on X. I have an appointment with MO on Monday. Hope the TMs come down to their senses, as they have been skyrocking nearly to 2000 in the last couple of months.. as much as the SEs keep bothering me (which chemo doesn't have any of them) pills have been convenient so far to me..

fingers crossed once again..

Ebr

girlwithacurl

AmyQ!! What great news! So happy for yiu

Nina27

Hello

I start Xeloda on Monday and wanted to ask, does your hair still grow while on Xeloda? I know that it won't fall out but just wondering if it will make any progress?

susan_02143

Nina,

My eyebrows thinned on Xeloda, but my now short hair cut needed a trim every 5 weeks. Hair grew without a doubt. I did find that the growth was slower during the first four months, and then it was back to normal. Good luck on this drug!

*susan*

Kessala

Nina27, I took Xeloda for 3 1/2 years and I needed haircuts the same as always. Hair growth wasn't affected.

Kessala

Lita57

For the new Xeloda people: This is what hand/foot syndrome looks like. For some reason it's worse this week for me and I'm 7 days on 7 days off.

Note how red the palms and sides of the fingers get.

My tablet camera auto color balances, but my palms and fingers are actually a deeper red than shown. I wear gloves when I'm outside and also to sleep. You can't see all the cracks near the finger nails. DH does dishes so I can try to keep my hands out of too much hot water. Feet look even worse. Actually hurt to walk today. Yes, the hands sting, burn, throb, and I can't make fists, but without xeloda, I probably wouldn't be here. My one year cancerversary is next month.

girlwithacurl

Lita, that looks so uncomfortable--I'm so sorry. Does the hfs ever let up for you? How soon did it show up after you started on Xeloda? I just today started my second week of my 7 days on and off. And I told my kids I'd take them to Knotts Berry Farm tomorrow. I think I must have lost my mind.

Lita57

girlwithacurl...my hfs didn't initially start until I was on my second 21 day cycle. My MO started me on 14 days on 7 off, for 6 months. In late November, she switched me to 7 on 7 off.

Side effects are cumulative. Being 7 on and 7 off helps keep the se's from being too brutal, but after several months, they will catch up to you. I do get a bit of relief on my week off. I'm thinking the other meds I was on for the last 2 weeks (I hurt my shoulder pretty bad) may have exacerbated my hfs.