Need a Xeloda buddy to bounce some side effect ??’s with

[BeckyHobson]

Hi, I am just now at the 3 1/2 year mark. Recurrence in April 16 after stage 2B in 1999.

MBC with METS TO BONES ONLY SO FAR (skull,spine,pelvis,mandible) Started with Ibrance, Letrazole, Zometa, then Those stopped working so did Faslodex with Zometa and as of January 2019 2450mg daily of Xeloda for 14 of every 21 days.

Besides the Hand & Foot Syndrome and fatigue level-I have found this stuff pretty bearable.

And my April scans showed shrinking tumors and no news ones. My monthly labs show good numbers with regards to kidney and liver function, etc. Red blood cells a hot mess and so so anemic but labs look “great” per my oncologist.

So, here are my ??s to those of you that share this same fun chemo drug with me.

1: severe hot flashes to the head and neck only?

2: pretty much a constant dull headache in your eyes?

3: ocular migraines? (One eyes goes all blurry for a while)

4: retention of abdominal fluid causing lack of appetite, feeling of fullness, weight gain, easily out of breath from minor exertion. Aka “ascites”??

I see my onc tomorrow for my monthly appt and blood work and I am honestly scared to tell him about number 4 that I very recently realized what it was and has been happening since about July. Not due for scans til October and honestly don’t want to know what I don’t know.

I’d love to hear if any of you experience any of these symptoms from Xeloda or if I’m at the 3 1/2 year point of doom. Bearing in mind that I’m the gal that refuses to look like I’m sick, live like I’m sick, miss an event because I’m sick, and I sure as heck don’t accept that I will die from this damn Cancer on some predetermined time line.

Thanks Sisters 👯

[SeattleMom]

Not a Xeloda buddy yet, but just to let you know how much your post impacted me. I’m at the 22 month mark with bones only and feel myself wondering how long my Ibrance/Letrozole combo will work their magic.

You sound like such a fighter and articulated so well the universal dread that accompanies this fight. You are my buddy just the same!

❤️❤️❤️❤️❤️ Linda

[BeckyHobson in reply to SeattleMom]

Thank you Linda💕. Great news on the Ibrance/Letrozole treatment. Keep doing what you’re doing

[SoCalLady]

I'm not on Xeloda yet, but probably right behind you. Also w/mets to all the bones that you mentioned. There are many ladies on this site that seem to be on Xeloda. Put Xeloda in the search engine and I'm sure some will come up.

[barbarac76]

Hi Becky,

I have been on Xeloda since mid-February. I'm sorry that you are experiencing the side effects that you listed. Of the four, I have only experienced the hot flashes (I think they are hot flashes) sporadiacally. My primary side effect has been the hand foot syndrome (more foot than hand). I have curtailed my walking dramatically to prevent problems.

I'm sorry I can't be of more help. I hope you get some answers from your oncologist. Sometimes, I consult a pharmacist from the specialty pharmacy where I get my Xeloda (mine is Briova). They have been consistently helpful and knowledgeable.

[BeckyHobson in reply to barbarac76]

Oh that is a great idea about the specialty pharmacist! Thanks!! I get my from Accredo and they always ask if I want to talk to one. I always say no thank you lol.

I swear by epsom salt foot soaks in warm water with ginger essential oil added but just one drop. Maybe give that a try for your feet. I had to give away pretty much all my shoes and have found the brand B-Zees to be amazing.

[barbarac76 in reply to BeckyHobson]

Thanks for the tips. I ordered a pair of BZees this morning. I agree with the other ladies - I like your attitude. Wish I could get there.

[BeckyHobson in reply to barbarac76]

I hope you love them them too!

[AnnaChurch]

Hi Becky, I took Xeloda for just 9 days.it was dreadful. I'm off now for recovery and expect to start at a lower dose next week. Although it was a short time, I had no hot flashes, hands and feet itchy, have headaches as you describe, blurry eyes, and vomiting even with the nausea pill. Weakness, fatigue, chills, restlessness, couldn't read, confusion. I have bone mets from head to knees...faslodex failed me. I'm savoring this week...i feel like myself!

Sorry to have such a neg report,but it got me a brain scan which was negative. Yay!

Sending good thoughts!

Anna

[BeckyHobson in reply to AnnaChurch]

Ya, doc started me on 4000mg a day and it about killed me!! Seriously!! Weened me down to the current 2450mg a day which I can live with but it sure isn’t Ibrance or Faslodex.

Good luck and praying the lower dose is much more tolerable. The Nausea was the worst. The nausea meds made me even sicker. I now take an omeprazole (heartburn stuff) at Costco every day and it works great!

[BeckyinMaine]

Hi Becky

I’ve been in a clinical trial with Xeloda and a taxable chemo in pill form— the test drug—since April. I too have the eye issue; have stomach issues but not ascites. Recently developed a fungus like annoyance under my finger nails attributed to Xeloda. I also have a lot of fatigue.

Good luck to you . I love your attitude; I am similarly inclined but it isn’t always easy.

Becky in Freeport Maine

[BeckyHobson in reply to BeckyinMaine]

Ok ok I’m starting to feel like this is normal for this drug now reading the great responses I’m getting😊. Oh yes! The nails 😢. Let’s just say we are glad Fall is here so we can cover those babies lol ! Great name by the way

[jstickrod]

I can be your Xeloda buddy! I have been on Xeloda since April 2019 after 18 months on Ibrance/Faslodex. I am on 1500 mg 3 times a day in the morning and 3 times at night - two weeks on the meds, two weeks off. Actually, I feel the drug has been pretty kind to me. I am a little nauseous in the morning after taking the pills with breakfast. I do experience fatigue, and when I am on the pills, I try to take a nap every afternoon. I don't have any of your symptoms regarding hot flashes, migraines, or eye problems. I have dry, itchy feet, but so far, no problems with hand/foot syndrome. I have to say probably my worst side effect would be the "metallic" taste in my mouth consistently. I have gained about 5 lbs, but I really feel that is due to lack of exercise. I just don't feel like I have the stamina for an extreme exercise routine. My mets are in my bones, lungs, liver. Wishing you the best in this treatment - my blood work remains good, my tumor markers are decreasing. I will be having my next scan in October. My oncologist only gives them once a year unless he sees something not looking right. Thinking of you as you continue this journey, and keep fighting!

[BeckyHobson in reply to jstickrod]

Way to go!! Great attitude! So you take how many mg total each day? 1500? So happy to hear the markers are coming down. We can compare scan notes in October. My scans (bone and CT) on October 29th with results at onc office November 1st.

[jstickrod in reply to BeckyHobson]

Yes, I take 1500 mg in the morning, and another 1500 mg at night for two weeks, then two weeks off. I am extremely tired during my weeks of taking meds, the two weeks off feel like a vacation!

[Kimr2081]

Hi Becky, I was on xeloda for about nine months only and only experienced the hand and foot crap, none of the other things you mentioned. Maybe I was not on it long enough. My best to you.

Kim

[Newtkim1]

Hi Becky,

3 1/2 years! That gives me so much hope. I have mets to liver & lymph nodes. I just started Xeloda in August. So far, just some slight burning in feet and dry finger tips. I do get some hot flashes at night. I went for my first CT Scan yesterday since starting this drug and everything had shrunk considerably! I am JUST like you! I refuse to look like I am sick, miss any concert because I am sick, miss any work for being sick...I am constantly thinking about "buying more time". Praying that I can get a lot of time from Xeloda!

Newtkim1

[BeckyHobson in reply to Newtkim1]

I feel so much better since posting!! Just saw onc on Wednesday and another set of fantastic labs. Sounds like this drug can work for quite a long time. Here’s to praying so.

[mariootsi]

I don't want to know what I don't know either!

[Cshipley123]

I have been on xeloda since March. I have every one of the side effects you listed! The vision migraines are so far only in my right eye. The eye also twitches a lot which is so annoying. I can handle the side effects if it keeps working. My next scan is in October. I pray it continues to work for all of us! I’ll be one of your buddies as well!

Colleen

[BeckyHobson in reply to Cshipley123]

You “buddies” have completely made my week. Thank you do much! I was convincing myself I had a brain tumor that Everyone was missing. Funny how our minds take over some times.

[MacroMom]

So good to hear from so many Xeloda buddies! I’ve been on it since June. I don’t have any of the other symptoms yet, but I am on 2600 mg/ day, 7 days on, 7 days off, which I think helps keep the side effects at bay. I did start having more foot soreness and HEAT in August when the weather was hotter. My ND oncologist recommended EMU oil, alternating with the Udderly Smooth. I think it’s helped! Your other symptoms may very well be Xeloda-related; I do think it’s important to tell or oncs about ALL our symptoms....so we stop worrying about them ourselves (most of the time my imagination is so much scarier than reality!) so we can get some relief, and so any issues can be treated as soon as possible. Meanwhile keep living life and inspiring us all!

[BeckyHobson in reply to MacroMom]

Love Udderly Smooth!!!

[MMMP]

I took it for over three years- I would take a Lasix when I would feel bloated in the belly- it worked for me- good luck it’s an awesome drug!!

[BeckyHobson in reply to MMMP]

Thank you!! This makes me feel so good and positive. I have a annual with my primary care doc next week and I think I’ll hit him up for some Lasix. This fluid roller coaster is ridiculous.

[BeckyHobson in reply to MMMP]

What do you take now?

[MMMP in reply to BeckyHobson]

Afinitor and examethane—just started about 6 weeks ago - ibrance did not work for me only on it for 5 cycles- my 15-3 finally went down this week on the Afinitor!!!!!! 💕

[BeckyHobson in reply to MMMP]

Happy Dance 💃🏻. I never “had the pleasure of that drug” lol. Praying that keeps working a long long time 🙏🙏