Afinitor not good for me, lots of side effects. My oncologist wants me to have IV chemo therapy. Every three weeks 4-5 hours need a port. 6 treatments. Has anyone had this did you get sick, loose hair. I am so nervous. I said not at this time, I would like to try Verzenio first. I know diarrhea is a main side effect but will try it. Was just asking if anyone had the IV treatment because if verzenio doesn't work that is my next option.
Barbara
Hi Barbara
When I was first diagnosed, mbc from start, I did 13 rounds of Abraxane. I think it is related to taxol. Did not need a port. Lost my hair. Wasn’t bad. Worked well for me. Side effects slight neuropathy which I mostly don’t notice and 3 hours afterwards needed the bathroom.
Thank you I am so vain, I hate the thought of losing my hair. Plus I was so sick on Afinitor I am not ready to be sick and helpless again. I told her I would like to try verzenio first. I figure it will maybe get me through the holidays if I don't get side effects from that. I appreciate your information. Maybe it won't be to bad. I am starting to look for a wig.
So sorry that Afinitor didn’t work. I’m two months in on it and also feeling it’s not working. My scalp met looks worse. In my bones and liver after Ibrance stopped working 4 months in...I had went for second opinion (just because)...that oncologist agreed w plans. Said after Afinitor, she would probably go to xeloda. My own onco said as well “one more med” then probably chemo. I’m mixed on chemo. I’ve read some good posts from people who had success. I know another person who is having it now—mostly tired and nauseous. She looks well. For me, the scary part is looking sick. I don’t judge anyone on looks. But for myself, I guess if I look well then I feel well. ❤️
❤️
I know, my biggest thing is losing my hair even though it is so thin now from the other meds. They all effect your hair. I am looking for a wig now. Getting ready, if I can hold off on verzenio until after the holidays. I hope I can find those good post so I will feel better. I just wish we did not have to go through this. My husband says just do it now. He does not know how it feels to be weak, nauseous, not want to eat, lose a lot of weight, and looking ugly.thank you for your post it does make me hopeful.
Barbara
The other good thing about Taxol is they can use Neupogen shots to hep your blood count with the Taxol which helps prevent infections.
You are really making me feel better if I need to do the IV chemo. Thank you! I went for my Faslodex inj today and was Asking questions like can I drive myself home afterwards. Was told no because they give you Benadryl to relax you. I Am so crazy about this. Sorry!
Hi,
Why can't you continue with Faslodex?
Because with the Faslodex they do a second drug with it. I am on only Faslodex now and my tumor markers are still going up. So they are trying to find a second one I can tolerate. I will try verzenio if not then it is IV chemo.
Hi May I know how long you are on faslodex? Which marker has gone up? I've read several journal and understand that the raise of marker may not correlate with the progress of cancer. And it shouldn't be used to stop faslodex medication. Pls check with your onco. My mom is on faslodex for the third month and the MBC is stable. She has mets to lung. Her CA15-3 has gone up from 150 b4 💉 to 300 last week. Her onco still continue with Faslodex.
I am still on the Faslodex. I just went off the Afinitor as the side effects to me were brutal. I have been on Faslodex for 10 mo. I will try it with verzenio this month when approved. My tumor markers are going up about 100 points per mo. This mont my ca 15 is up to 1168 and my ca 27-29 is up to 898. When I was on letrozole and Ibrance the went down to 68. So I guess it is time to try IV chemo. I am trying to put off till after holiday.I am having petscan next week that give a better look. I know you cannot always go by markers a lot of things can raise them. Thanks hope your mother stays on the Faslodex as I do not have any side effects from it.
I gave them to myself in the abdomen. I have a bit of fat there. Didn’t have to go all the way back to NYC for shots.
I did Taxol IV when initially diagnosed as stage 4 MBC. I had18 total brain radiation treatments and then Taxol IV once weekly for 3 weeks, one week off, repeated for 3 months. I lost all my hair but it was from the radiation, already gone before the Taxol but I do know most people lose their hair on it. I didn’t vomit with it but definitely nauseated and tired. I eventually figured out that how bad I felt was more the brain radiation. It took me a year to feel better. Everyone reacts differently but I don’t think the Taxol bad. The tough one is adriamycin and cytoxin which are given together. I thenwas put on ibrance and Faslodex and thenswitched to Verenzio. I had no diarrhea, have constipation. Take miralax to control it. I am now on Zeloda Nd Temodar to try to treat increased new growth in my brain. I am running out of options. I have had to give up so much this year i already feel I’ve lost most of who I am. Having another set of scans before Thanksgiving and will see. I guess if I were you I’d see what my oncologist thought. The port is no big deal and would definitely do it you choose IV and would definitely consider the Taxol if recommended. I hope which ever you pick the disease responds to. Let us know. I did get neuropathy in my feet which was one reason we changed
Thank you so much for all the information. I know I will have to do the IV Taxol and I probably will loose my hair. So sorry for what you are going through I feel bad complaining For my problem. I am going to try the verzenio just to get me through the holiday since I might be sick with the IV treatment.. when I did the Afinitor I some fingernails fell off I lost 25 lbs could not eat caught pneumonia. Was in hospital a wk. just hope not so many with verzenio. My oncologist said the Taxol will be every three was for 6 treatments. Thank you again it really helps to know someone that went through it.
Barbara
You will use your hair by around 3 infusion. It wasn’t bad. Didn’t need a port. It does cause neuropathy so not everyone can finish entire treatment. I have a tiny bit of neuropathy from it. Worse when I am tired. Otherwise don’t notice it
Thanks all information helpful. How many treatments did you have?
As best as I remember I did 12 or 13. The max. I had great results in fact better than any subsequent treatments.
That is so good to hear. I will take as many treatments that I can. I want to knock this cancer down as much as possible.
I forgot to ask, did the Taxol help kill some of the cancer cells. I am having a petscan next week as a base line and see if the Afinitor did any good. They wanted to try a lower dose but I was too nervous ..
Yes. It helped shrink some and others just didn’t grow. My neuropathy just got where it was a concern.
She did say if I got neuropathy They would stop it. I am glad it did some good for you. I will have a petscan next week hoping Afinitor did some good considering all I went through with it.
I just stop taking vercenzio. I very bad side effects with the diarrhea. Got dehydrated had to go to hospital. They decreased by dose from 200 mg to 150 mg. I still had bad diarrhea every single day. On the 16 will start IV taxol. Stay strong.!
They are waiting for approval of the verzenio lets hope I can tolerate for a few months. Trying to get through the holidays. I will be watching carefully for bad side effects. Do not want to spend week in the hospital. Thank you for telling me . Will have petscan next week. Hoping there is some improvement from the afiniter.
This may sound flippant and it’s not meant to be. I lost my hair with the chemo for my stage 2 breast cancer and losing my hair was far worse than the effect of the drugs, so I completely understand your fear. Our hair is such a big part of our identity. This disease messes our bodies up why can’t it leave our hair alone!
My advice is if you do lose your hair, don't just get one wig get several and then go to a good hair dresser and get them styled. Wigs look false because they come with too much hair for most people. People were genuinely amazed if I told them it wasn’t my real hair. Take control of the situation it will make you feel better.
I chose my wig according to my mood. Some days I was the blond bombshell with the beehive, others I melted into the background as a mousey brunette. I hope you don’t have to lose your hair but if you do take control don’t let it control you.
That was my thinking too. If I have to loose my hair, I’ll get a couple of wigs. Straight hair, wavy. And I think I’ll be pretty honest and obvious at least for people that I work together.
I find the hardest thing is the color. I have light brown hair and some blond highlights. They all look to dark or to blond. But I am looking now so I can wear and get used to before I start IV chemo.
Thank you for making me feel less vain. Hair is a big thing to most women. I am looking online at a few real hair wigs, I will go to some shops to try on. I would like to start wearing them now so I am ready for this.
It's hard when you have friends that think you can turn down treatments if you don't like them. Or go for second opinion because you don't like what the doctor says. I find this site so informative. All oncologist seem to follow a program. Mine said if you have two or three meds that do not work it is time for IV chemo to get things under control lYou can't keep Taking meds that are not working. I trust my oncologist, but people always think there is a better one out there with different ideas.
If you get a wig be sure that they measure your head. American Cancer society has information on how to do it yourself. You will not be happy with it if you get the wrong size. Believe me, I know. We still don't have internet or cable since Hurricane Michael. Our whole city is without Comcast or WOW and trying to type on the phone is tough on old people. Good luck. Blessings, Hannah
Our diagnosis scares, and people not in our position deal with it by not understanding how serious it is and I find it easier to let them, but it is frustrating when they just don't understand that losing your hair isn't a choice you are making voluntarily. It's amazing how many experts there are out there!
I think getting this sorted before you need to is a really good idea. I went to a specialist salon with my daughter before I started treatment and the stylist gave me different options to try. (Pity you aren't in the uk.) She was very positive and it wasn't an unpleasant experience. After that I used a couple of good quality suppliers on-line who would allow unworn wigs to be returned (despite the law not all suppliers allow this). I also found that prices were better doing this. And even if you think the wig looks ok take it to a hairdresser you trust for her opinion. It's well worth it.
I was very open about losing my hair though no one saw me bald. When people got used to my different looks they went with it in the same way they would have done if I had had my hair restyled. I found if you appear positive about it (even if you aren't on the inside) other people will be positive too.
Natural hair wigs are expensive, don't dismiss the synthetic ones - though you do have to avoid heat sources such as standing in front of the open oven or patio heaters!
Don't get hung up about having the same style and colour as you do now. Wigs do sit differently and you might find it emotionally difficult if you don't find exactly what you are looking for. I had 7 wigs in total, a couple of the same style in different colours. That may be considered vain, but you certainly aren't being.
Thank you. I know checking the web some wigs are very expensive. I want to be ready for when the time comes. I did measure my head. I ordered one online last night. My daughters said it looked like my hair is now. That is what I want. So it was $208.00 which I can afford. Some in the stores are $2000. It is human hair, came with under cap has lace front. I hope it looks and feels good. I saw anouther one I liked. I guess I can take to hair dresser and she can trim or shape to me. I can't believe I have to do this. I thought since I did not need IV chemo in the beginning I would always take pills. This was a shock to me.
I think it's a horrible shock whenever it happens. I was told by the breast consultant that if I had axillary node clearance and they were clear I wouldn't need chemo so I had it done, and the nodes were clear, then the oncologist couldn't say I didn't need chemo. I have to admit that I felt like I'd been conned. The node clearance caused lymphoedema, if I could go back I wouldn't have had the node clearance done. But heyho, that clock can't be turned back.
But if you do need this treatment, it won't be as bad as you are anticipating and neither will be the hair loss. It is horrible but imagining it is far worse.
Another tip for you to think about, if your hair is long (as mine was) get it cut into a glamorous/fun short style before you start treatment. Mine went quickly after treatment started and it made it easier because I'd had it cut, somehow it seemed less like my hair, if that makes any sense. I'd already chosen to change my look and I wasn't giving the cancer the control.
Lace fronts are good and give a softer more natural front. Wig liners make them a lot more comfortable too.
I'm sorry if I'm giving too much information, I know it's a lot to take in. But you are going to cope with this, it's just another step in the journey.
Thank you, I did order a wig with the lace front and a liner. I am hoping to wear it a few times before the treatment starts so I get used to the look.
I am on regimen #5...still looking for something that will knock down the cancer and keep it there. I have bone and extensive liver mets
I just got thru the 1st cycle of Xeloda and side effects were much worse than the IV chemos i have done, Including Adriamycin. I also did Ibrance w Faslodex as an infusion alternative but not successful. I woud say that every treatment is scary, infusion or oral. As far as hair loss...i say better bald than dead. Get some cute hats and embrace it for what it is. I wish I didnt have a reason to be a part of this forum but thankful I found it. Reminds me I am not alone. Prayers and hugs for successful treatment with minimal side effects !
Thank you for getting back to me. It does help when you hear from someone that went through it. Just to hear that it is not so bad. I know I have no choice if the verzenio does not work. I am just getting myself ready mentally.
I took vercenzio for three weeks had diaherra every day very bad went to hospital for dehydration. I took the 250 mg dose first then 100 mg dose. Still had diarrhea every day on the lower dose. I will start taxol next week. Can’t take vercenzio side effects too bad for me. Stay strong take care.
Thank you, good luck on Taxol. Please let me know how you do with treatments. Hope verzenio gets me through holidays without diarrhea to bad. Next will be Taxol for me also.
Hi RomeRom, just thinking of you and wondering how you are doing on Taxol.
I know it makes you tired and you may not be checking in on the site. But sending you some hugs and good thoughts. You will get through this and we will talk about it later.
I start Taxol on Jan 10 th.
Again I am thinking of you and hope you are doing well.
Barbara
Affinitor was a part of a trio of drugs i took in a trial through UCLA. The combo kicked my butt and had to quit it. We have found that hormonal therapies just aren't working for me so now I am on Xeloda which is an oral chemotherapy drug. I could have gone on another trial that was Xeloda and some type of chemo that was an infusion. I chose not to do that. This may sound really vain but i was just over loosing my hair again. Did that when I was first diagnosed. The Xeloda is pretty easy to handle and the side effects so far have been really manageable. I am on my 6th round. Not sure if that is an option for you but you might ask about it. Good luck and keep us posted.
i am just starting my 10th xeloda round and i love it! my cancer is regressing and looks like bone mets are healing...my hands and feet kill, but small price to pay. i am still golfing, hiking and swimming. i switched to one week on one week off... to mitigate the feet and hand pain...but just did that this last cycle so not sure if it will help... good luck!!!
Thanks for responding. I have scans next month so hoping for good news. It really is a fairly easy treatment to be one. Nothing on my hands and sometimes when I have been in shoes all day my feet are really sore - feels like I sunburned them and then walking on them. I do have a rash on my arms and on my shins but like you say oh well, small price to pay. I am not going to let the possibility of the hand and feet crap stop me from working out and walking the doggies. Take care.
I’ve been taking xeloda for the past 3 years - have the dreaded hand and feet issues- what do you take for the pain -even on my off days my fingers burn and skin is so sore??
oooh three years?! lucky you!! my dr said some women get ten!!! that is what i am hoping for and then they'll have immunotherapy for us
i sometimes take advil...i see a podiatrist who fixes me up with relieving ingrown toenails, trimming the river-cracks in my heels and just treating me like a queen... it is so great to see a dr and NOT discuss cancer! try this new gold bond overnight cream...lather up and put on some cotton gloves and sox i think my pain is worse on the off days...but i am hoping the one week on/off will make it better. i know golfing makes it worse, but advil def helps and so does aspercreme. just keep trying emollients until you find a good one... they say take b6, which i do, but not sure that does anything... keep in touch and ice bags at night. or wrap your hands around a cold chardonnay lol. xo
Thanks for the advice- a cold beer often does help- i would love to get ten years my 15-3 is slowly starting to rise but going to stay on it- my dr feels it’s still working- have tried all the creams but not the gold bond will give it a try. I still get my nails done monthly and bi-monthly massages! Advil twice a day will get some B6. Can’t hurt. Thanks 🖐
Hello, I"ve had chemo upon first diagnosis in 2012. Now, with recurrence and after Ibrance and Faslodex stopped working, I'm having Taxol and Gemzar. Didn't want to lose my hair again so I'm doing these cold caps that a friend used -- and they worked for her. So far, so good. After 3 treatments I still have my hair. They aren't cheap, but not having hair comes with so much baggage.
So far have resisted a port. For the time being I have good veins and really don't want anymore reminders of this cancer crap that I already have. Remember, you can say no. I also said no to the tattoos they wanted to do for radiation.
Here's a link to the cold caps in case your interested: penguincoldcaps.com/us/
Best of everything to you. It's scary, but you can do it. I hope the Verzenio works for you.
Thank you so much for the information. I will check out the cold caps. I just bought a wig, trying to get my head ready for this. They checked my veins and said they will not hold up to the chemo without a port. This is so scary. L
Thank you for asking the question - and thanks to all those who replied. I, too, am looking at some IV chemo as my next treatment and absolutely dreading it. I do not want to lose my hair as wigs in the Lowveld of South Africa are too hot almost all year round! Also doubt I could afford one looking at the costs quoted. mostly I am afraid of being ill ao much of the time and being dependant on my sister (we live together and she was a nurse). She will take on anything but I just feel that, after spending much of 10 years caring for elderly folks, often difficult ones, in UK to cover losses incurred by having to leave Zimbabwe, she doesn't need the stress of looking after me - she has a life to live too. We have not discussed it as I just don't want to have her feel she must. Currently I am on no treatment as Oral chemo and various oestrogen suppressants (no combination drugs available to me though) stopped working. My liver mets are not troubling me and my quality of life remains pretty good although I get a bit tired at times. I see the oncologist again in January (all being well in the meantime) at which point she will re-assess.
Much of what has been said here is encouraging (except the part about being able to drive !) so thanks
All the very best and keep us updated on how you do
Izzy
i have not - but i would do what your onc recommends - i know it is scary but they are recommending what is best long term. get your infusion center to give you the dignicap or the penguin cap (penguin - you need a friend to swap out the caps...) but they can freeze your scalp to minimize hair loss. where are you? sloan kettering? just do the treatment that is dr's first reco. you will bounce back! it is just a temporary annoyance...you are in this for the long haul!! ask the chemo nurse about side effects...many of them are super tolerable... don't give in to anxiety or fear. you are stronger than they are!!! hugs to fellow jersey girl. i grew up in edison
Thank you, I go to Rutgers in Newark cancer center. But I will ask about the cold cap. Someone said they are good but when I checked it is about $500 per mo. I guess I will get used to the idea since I have no choice. One more thing to go through.
I had 6 IV Chemo with Taxol for Infl BC. So glad I had medport. Much easier for IV. It is good tx. Last one was tough. I did count down, which helps. Be gentle with yourself. Side effects n&v, and peripheral neuropathy.
I'm glad Taxol went well for you. I am still having treatments. I now have cystitis. Did you have any urinary problems with it. I have blood in urine and they are checking it out.
Barbara
Morning smoothie to help verzenio side effects.Watery eyes....is it letrazole?
VERZENIO question
Support by drug? I want to stay here, I don’t feel so afraid with this group.
