As you all know I started xeloda Tuesday. Today I woke up with a rash. I had an appt already to meet a new allergist so I went. She wound up to be a sweetheart and she called my oncologist. Have to stop the drug and go see him this afternoon. My head is in a fog. I am so upset. I am willing to fight this damn mbc and my body is just not helping. I would stay on it with steroids and antihistamines but he said no. Now they are afraid of an anaphylactic reaction. I have been carrying an emergency kit to begin with- steroids, epipens, Benadryl.
This feels hopeless right now. I feel like I am going to lose whatever neurons I have left. Cannot believe this.
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Francesca10
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Frances, I want you to know that I have been thinking about you this week and after reading your post I am in tears. My heart is breaking for you. My prayer is that you are right where you are supposed to be and this happened for a reason that isn’t clear yet. Maybe Xeloda is not the drug for you and you are meant to be on something different. I can relate to how hard it is to fight when we have setbacks and you have had way more than your share. Stay strong. I’m sure your medical team is already working on next steps. I wish I could give you a huge hug. Tami
This is rough. I feel I need a miracle now. My body just isn’t cooperating with drugs. I don’t know what is next. Thank you for you- kick ass for me please... beat the beast!!!
Francesca, I’m praying for a miracle for you! Please take good care of yourself while this gets sorted out. I have you in my thoughts and prayers. Tami
I am so sorry to hear this. Haven't been on this site for a while. Been having my own issues as well. Sending you a hug and hope you can find some relief. This dreaded disease does SUCK!
Hi Frances... I’m sorry that this has happened. I hope your doctor finds a solution for you today. Perhaps he will have you do bloodwork. I too have been experiencing different pains lately. It’s sucks to feel sh***y! I will be thinking of you. Please keep us posted. xoxo Maria.
By now you must be home, so please update us with what happened at the docs. I wish I could wave a magic wand and make this go away. I don't know where we get the strength to keep going with all these obstacles thrown in our paths. There are a lot of drugs out there, and they will have to figure out what will work for you Hopelessness is the worst. When I get really down, I take a xanax or two and listen to Kris Carr or Pema Chodron. This will pass, there will be another path for you, you are in the midst of a mini crisis and just too overwhelmed to see that right now. Sending you a lot of love and wishing I could do more. Do what you have to do to get a good night's sleep. Hoping you got some reassuring information from your doctor.
Oh Nancy. He was upset. He said it’s rare. He did the liquid biopsy and I said to him let’s be real- one of the common side effects from
Piqray is a rash- what are we doing? He chuckled- then got serious- tells me 70% who take piqray get diabetes. I said I probably have it from all the damn steroids!! He wants to talk to the allergist again. It was my first time seeing her- she hugged me when I was leaving.
There are no clear cut answers here. He mentioned IV chemo and I said no. So here we go again- no treatment.
I am doing research into these drugs. Hypersensitivity is common. The problem with me is long history of drug allergies causing anaphylaxis. The allergist told me it is so difficult if not impossible to desensitize someone to a drug. She was willing to try steroids and antihistamines so I could take xeloda but when she spoke to onc he said no.
I have to think with clear head. Maybe we can lower xeloda dose and do the allergy thing. I was too upset to think straight when I saw my onc- plus my bp was high which upset me more.
Thank you for the love- I need it. I want to cry and it won’t come out.
I’m so sorry Frances. Can your liver mets be treated with the SBRT or Sabr (radiation)? I think Barb had it done on her liver mets but experienced fatigue after the treatment. Sending you love and hugs.
Maria
Aaaarrrrggggghhhh Frances.
What an absolute nightmare. Brick wall after brick wall. You must feel so helpless. Sounds like they are looking into other things for you. Having a sensitivity sucks. I have one to Iodine which causes problems with scans and eating my favourite shellfish. Excuse my ignorance, but isn’t a sensitivity different to an actual allergy? I still eat prawns sometimes, just to prove I can!!!!
Keep that head rational and know we are all fighting for you.
Oh Frances my heart breaks that you are having a problem with Xeloda. Maybe it is just not the right drug for you. I'm sure your onc will find a new plan for you.
Stay strong. You are not alone. We have all lost neurons. We just do our best with this damn disease.
Praying for a solution! I to have hypersensitivity issues. Had a level 4 reaction(5 is DOA) to my Perjeta but mine our IVs so they drug me every 3 weeks! Benadryl and steroid...never thought about the fact that it could carry over to pills...😱...
You need to take colostrum. My mother is very allergic to everything. Since she start taking colostrum she have not have episode of allergies in her body.
I also got a rash when I was on xeloda and they gave me a topical steroid cream. It worked okay but what I found worked better was fractionated coconut oil with frankincense essential oil. They never made me stop the drug. I hope you get some answers. Dang life is so freaking hard!!! ❤️
Dear Frances: I am so sorry for your ongoing problems. It sounds difficult to and overwhelming!!! I am sending prayers, hugs & love 💕 🙏 to you. I hope you have someone close to you who can encourage & support you. ❤️🙏❤️
I am so sorry that you have so much piled on you! This lousy cancer plus allergic reactions to treatment is so blasted unfair! Is your onc a bc specialist? an onc who sees only bc patients? If you are in the US, the top tier of cancer centers are the Comprehensive Cancer Centers--a link to the list of those on the National Cancer Institute website is on this group's homepage under 'resources" -on the right side of the screen. I have allergies, too, and carry benedryl and an epipen. But so far the only one of the meds for mbc that I've a reaction to is Zometa, and I was able to tolerate it at a half dose with a benedryl hydrocortisone IV prep, extra fluids and a 2 hour rather than 20 minute infusion time. I've not been on Xeloda and am not sure how it is taken. I hope you and your onc can come up with a plan that will work well for you! Maybe rethink your rejection of IV chemo. The advantage of those is that you would be there where they could monitor you for allergic reaction and could prep you with steroids and/or IV benedryl. Extra infusion time and extra fluids can help if you are allergic to the chemo, too. This may sound odd to you, but when Xgeva was approved by the FDA and I switched to it, I missed being in the infusion room where I could chat with other cancer patients while getting the infusion. Both allergies and cancer are inflammatory so perhaps the allergist and onc could come up with a plan to lessen inflammation. CBD tincture, tart cherry juice, turmeric (aka curcumin), fish oil and glucosamine/chondrotin all do that. Avoid tomatoes, bell peppers, and egg plant. (I so hate to avoid the first two and hve refused to give up marinara sauce and pizza! ) Let us know what your onc ends up suggesting!
Hi, I'm so sorry this is happening to you. It must be so frustrating and frightening for you. I wish there was more I could say to allevite your fears but I'm no medical expert so I can't explain it and have no words of wisdom, just words and love and support for you. I'm sure your medical team will come up with something else, just hang in there and know we're all rooting for you. Big hugs. Josie xx
Hi Frances, I stared Xeloda that same Tues. I lasted only 9 days. I got iv fluids today due to vomiting and loss of appetite. How was it for you before stopping?
So sorry Francesca l too have many allergic reactions to treatments they have tried on me. Ibrance, tamoxifen, Afinitor, evermestine, etc. Allergic to all dyes when I have my mri and cat scans. I just got my pet scan results back a few days ago and it was not good. There was still progression in all of the areas in my spine ribs scapula hips etc. She wants to Try xeloda
Unfortunately I can't start because the cancer has now spread to the frontal lobe area
In the brain. I have a mri schedule in a day or two and then an appt. with a radiologist . I have not looked anything up regarding mets to the brain. Has anyone been in my situation
. I can definitely tell you that this time I scared. What a journey Take care all of you
Shelby, so sorry you are going through this now. This is such a damn difficult road we are on. I know the fear and anxiety. I know there are radiologists who do just the brain with success. Breathe, one minute at a time. Sending you hugs love and prayers♥️♥️♥️🙏🏻🙏🏻
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