I have stage 4 metastatic breast cancer with Mets to bones and liver. I took Ibrance for 11 months before it quit working, then a short 10 days on Piqray which sent me to the ER with anaphylactic shock. Now I’ve been on Xeloda for only five months and is no longer working. My cancer antigens are going up and cancer Mets on liver are growing. Now my oncologist wants me to go on a chemo drip which I was hoping to avoid. I had a chemo drip six years ago along with bilateral mastectomy. Hopefully they are less debilitating now than they were six years ago. Also praying not to lose my hair again. Has anyone else started drip chemo after oral chemo lost its efficacy and what was your experience? I have an appointment with the Mayo Clinic in Jacksonville, FL on November 1st. Has anyone else gone to a major cancer clinic for a second opinion? Was wondering what to expect, how to prepare and what questions to ask. Thanks for any info. Blessings and love to you all. Sandy
MBC changing from oral chemo to drip - SHARE Metastatic ...
MBC changing from oral chemo to drip
So sorry to hear this but going to Mayo is probably a very smart thing to do! I have been on Faslodex & Ibrance for 3 years and I have no idea what will happen next. I'm unable to answer your questions. Just wanted to say "keep a positive attitude"!!😁❤👍
I am going to MD Anderson tomorrow. Maybe I will have more info after that. I have seen many on here who have had good results in the liver on Xeloda (sp?) Has that been offered as an option?
Yes, that is what I've been taking for the last five months which has now stopped working and my liver mets are getting larger and cancer antigens going up since taking it.
Do tell us what was MD Anderson like for you?
How was your appointment with M D Anderson? Did you make the appointment or did your oncologist make it for you? Do you feel it was worth your time? Are they offering anything different from what your oncologist prescribed? Blessings to you💕
I made the appointment. The oncologist there agreed with changing to Piqray and Faslodex. I will also start Xeloda and continue with Zoladex. Not really looking forward to any of it.
Piqray and Xeloda are both chemo drugs. Will you be taking both at the same time. I was given Piqray before I started on Xeloda. I had horrible side effects on Piqray until day 10 when I was in the ER with anaphylactic shock. So that’s when I switched to Xeloda which I tolerated quite well until it quit working after only 5 months.
Sandy, so sorry to hear that you have progression. I have mets in the liver, sternum and lymph nodes. I was on Ibrance/Faslodex for about 10 months when it stopped working. I was offered three options: Xeloda, Piqray and IV chemo. My oncologist recommended the IV chemo to knock the cancer back. I chose to follow that recommendation and I am currently on Abraxane with Keytruda. I have never done IV chemo before and I was petrified to go on it, but I have tolerated this cocktail quite well -NOT debilitating at all! In the beginning I had diarrhea, but that is now under control. I have lost my hair, but I chose not to cold cap. I am a tad bit more tired, not bad though. I have now had eight treatments of chemo and I am happy to say that I am getting good results from it! What chemo would you be going on? I have heard cold capping helps to keep your hair, so maybe you can do that. I never got a second opinion, as I already go to a major medical center. Wishing you much success with your next course of treatment - May it be manageable and effective for a very long time! Blessings to you🙏❤️
Glad to hear you’re having good results and tolerating it well. How often do you have the IV and long does it take. She is putting me on Gemzar one day per week for three weeks and then one week off.
My cycle is 2 weeks on and 1 week off. I get my meds one day per week for two weeks and then one week off. The first day of my cycle I get Keytruda and Abraxane, each takes a half an hour. On the eighth day of my cycle I just get the Abraxane. The next week I am off. Blessings 🙏
Hi, May I ask you if your type is triple negative? I know they do Keytruda for triple negative type. Once I asked for it This is what they told me. I am Er plus pr minus and her2 minus. I am on xeloda taking two weeks off but my liver functions are too high. Best,
Marina
Hi Marina -No, I am not triple negative. I am ER+, PR-, HER2-. I was able to go on Keytruda because I have a high tumor mutational burden (my cancer has a lot of mutations), I am in the 90th percentile, and I also have 50% PD-L1 tumor associated immune cell staining. Because of these factors my oncologist said Keytruda would be a good treatment for me. Best to you my dear, may Xeloda be effective and manageable for you and kick cancers butt! God bless you!🙏❤️
Hi Missmadie,Thank you very much for your reply and very nice words. I also wish you success with your treatment. God bless us all!!! I am not religious but I ask God every day to help develop a cure for all of us. Since I learned about ErSO I became very hopeful. I hope it will be a cure.
Best,
Marina
Hi Kellyonekanobe I have had similar experience as you. Was on Ibrance, then a few other drugs, then Xeloda (5 months) Verzenio (12 weeks). I had mets to Bones only until my 12 week scans following Verzenio showed progression to liver and lungs. Drats. No more oral pills left to take so onto IV chemo.
I just started on vinorelbine which is less toxic (no hair loss) and a 15 minute drip. But I have to get blood drawn first so they can make sure my white blood cells are at a good number. If so, then i get the vinorelbine. The cycle is one drip per week for 3 weeks; 4th week is a rest week. So 3 weeks on, one week off.
I just had my 2nd drip on Tues and so far my side affects have been fatigue on Thurs and Friday. I have not had any hair loss that i can see. My bones sometimes ache a bit but I think that was before vinorelbine.
Hope this helps.
I was told by my onc that the average time that xeloda works is 6 months...(obviously with many people outside that timeline)
I have no answers to your questions but send loving thoughts to you. I too began with bi-lateral cancer, two different types. I had so many chemotherapy infusions and targeted therapy infusions and got through it all. So will you! I am much older than you and am still going strong. So will you!XXX OOO
Who are you seeing at Mayo? That is where I am getting treatment with Dr. Moreno.
How do you like it there? I will be seeing Dr. Advani.
I like it. Everyone in the breast center is very nice. I have never gotten a 2nd opinion and will do that when I have progression. Where do you go currently? Did you just call Mayo or did your Dr reach out for you?
I called them myself. We'll be at a wedding in Jacksonville the weekend before so I felt it would be convenient. Everyone raves about their MN location but I never hear anything about this one. Hoping they have the same reputation and I would think they would exchange info. I live in Virginia Beach, VA. My first experience with chemo six years ago I was going to a very large Cancer Center, VOA. You could not call and speak to a human. The call would give you a menu of choice that put you through to several voice messages and you seldom got a call back. The chemo room had 50 chairs. Most getting a 4 hour drip with 7 bags. Six nurses were busy changing bags as you heard beep, beep, beep continuously. No one looked at you or spoke to you, asked you how you were doing etc. It was very cold (not temperature wise). My oncologist who I really liked at our first meeting, I seldom saw after that, only her PA and they they never checked in on you while in infusion. I'm now in a very small office which has 8 chairs in the infusion room and there are 2 nurses and a PA in the room, who are all very nice. My oncologist I see every 4 weeks. I like her in many ways but she gets upset and seems to take it personally and will not discuss nutrition or supplements that I want to add. I tried to talk to them about Fenbendazole and her PA told me I'd have to see another Dr if I wanted to take that. This is for sure much more info than you wanted. Sorry - venting!
I hope your appt goes well and you are comfortable with the onc.
Dear Kellyonekanobe! I wish I had an answer for you. You are doing the right thing to go to the Mayo Clinic. This disease is so insidious and random…so your treatment will be trying to steer you through a maze of possibilities. My only advice is to make sure you are eating, consuming a good anti inflammatory diet. Explore the different types of supplements that help with inflammation and have shown promise to fight cancer cells. I also belong to a group on Facebook: Jane McClelland Off Label …she wrote the book How to Starve Cancer. You may find some direction there that you haven’t tried yet. Stay positive…there are ways to prolong life and keep you comfortable for much much longer! My best wishes to you…💕
Hi Sandy,I also had a bilateral mastectomy with a trim flap in 1998 which stage three b cancer. I then went on A/C then full Dose taxol which was all
Pretty brutal and I did get infection Why won’t Taxol in the hospital for a week and they thought I was going to die. But obviously I didn’t hear it is 2021! I went on IV taxol reluctantly only after I actually saw the scan results of how my liver progression was going I knew I had no other choice if I wanted to stay around. I am being treated At Georgetown Lombardi Cancer Institute. So being scared to death, I jumped in. I was pleasantly surprised how much better I felt and feel on iv taxol Than i ever did on oral meds. I generally feel very well the entire week,
Except for the day of infusion when I’m really tired.
Thanks for your reply. How long does the IV take? How often do you have it?
First infusion you can plan for 4 hours. But after that, I normally will be in a room by 845 and be done by 11 . Beginning treatment is 1/2 dose of what you had initially as taxol, and given for 3 weeks in row, a week off when I see my onco. I did that fir 6 treatment rounds. Last round and this are now 2 weeks one off. So I am currently happy to have less overall . Plus I agreed the firstRound to have the steroid to make sure that I was not allergic to the drug which is quite serious. Although neither I nor my doctor thought I would be you just never know. So I did that the first round and then I said OK can I stop the steroids and she said yes. I’ve been so much better since I stopped the steroids. They just are problematic down the road really not good for your body. Plus wind up promoting information after they take it down so I want it off as soon as possible. And since May I have not had them and feel just much better without them. Now this month I seem to get a little more tired for two days after my chemo, which has not been the case for the last several months it’s usually just the day of chemo that I’m tired . So I asked about that and she said she could reduce the Benadryl sounds like OK great. So I had less Benadryl this time I’m not sure how much difference it made other than I could speak and walk when I got home but I was still a little tired the next two days .
My hair did thin and I had an odd experience with it being that it on the top of my head one day when I had a scarf on to go to sleep and I couldn’t get the wad of hair and not a no matter what I tried so I just cut it all off. As I also have been without hair in the past, I didn’t really care. Funny, but it’s kind of pleasant not having to deal with hair and having it bother my neck when I sleep. I have some wigs, ton of baseball hats of every color imaginable and some scarves that I wear when I go for chemo. The reason I wear the scars for chemo as I can’t keep my AirPods in my ears with the hats. When it gets cold out it’s nice to have a cashmere hat or something soft and light weight on your head . I do hear some women don’t lose their hair, but when I see a lot of those women hair is so thin and their summer scalp showing that I would rather just be bald. With that said, I absolutely went on Amazon and purchased ice packs for my feet and hands to help ward off neuropathy. I am in my eighth month of treatment and so far doing well in that account. Although now that I say that I have to order some more ice packs because one of them broke inside of my sock! What I find with the ice packs is that I wear a lightweight cashmere sock on my foot after I put on some foot cream then I put the ice pack on top and it’s tolerable. It takes about five minutes or so then your feet are just kind of numb and it doesn’t bother you anymore . The hand ones bother me more actually. So I find myself taking them on and off during my a couple hours of treatment
Kelly -- I was on Ibrance several years ago and then went to IV chemo and have been on different types of medicines the last 3 years. Some drugs are more tolerable than others and everyone is different. Even the times in the IV chair are different. So you can hear about others' experience, that doesn't mean it will be yours. I think it's great to get second and even 3rd opinions, just be prepared to get 3 different answers sometimes. That's what happened to me and it was a little frustrating. I did the cold caps for 3 years and kept my hair, so it works. Then, I went on Trodelvy and still cold capped for more hours on infusion day, but still lost my hair. All the best to you as you navigate your next steps. Lynn (one of many Lynn's on this site). :=)
I am so sorry to hear this Sandy, but I think that getting a second opinion from Mayo is a wonderful idea. There might be a clinical trial that you can get into or some other ideas for treatments. I hope you will find some good answers before you have to start chemo. Hugs
The other things is did you ever have genetic assessment? There are other drugs around, that target different genetic mutations, but perhaps your doctors have already tried what’s applicable for you? If not I would look into sending stuff to Foundation One - they break down all the options for you going by your genetic results . Your doctor’s office should be able to arrange it all very easily for you using previous biopsy material
Hi Kelly,How was your appointment In Mayo? I hope you got some results. What treatment plan did they recommend? Did you like your appointment? Thanks in advance for sharing
Best,
Marina
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