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Chemo as a "reset"

Hi....I was diagnosed with metatastic breast cancer in Sept of 2015. I had chemo followed by a series of hormone based cancer drugs. I am currently on Afinitor/Aromasin. At my monthly visit on Friday, I was shocked when my onc suggested that it would be a good time to repeat chemo. She said she likes to periodically repeat the chemo to "reset things". Like most of you probaby feel, I thought chemo was pretty much related to death. Horrible stuff and it took away basically 4 months of my life. 2 months of chemo and 2 months of slowly recovering. She is suggesting at this point but I wondered if anyone else has gone through a second round of chemo for this reason. She says I still have a ton of cancer fighting medicines left but she still would like to do this?

Keep strong everyone! This journey is certainly not easy but I am surprised to be here and healthy 3 years later Healthy being a very relative term. LOL

Alice

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Hi. I have personally never heard of this but I'm no expert...my oncologist and second opinion oncologist have told me that we keep using the same drug until it stops working, then try another. It sounds like you are stable unless I misunderstood, so I don't understand why your oncologist is suggesting chemo. I to would question it, try to research it, and get a second opinion.

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The afinitor/aromasin may have stopped working. My counts went up a little last month and I had tests again Friday so we will see. We have been doing exactly what you said so that it why it surprised me so much that she would like to try this approach.

Thanks for your input Bluebird. Much appreciated.

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I have not heard of that either.

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My Oncologist has said the same thing as Bluebird77’s. She says there are many options available before we have to go to IV Chemo. I would ask for the science/reason a “reset” would benefit you. It’s hard on your body and mind and I would want to know the benefit of putting myself through that. A 2nd opinion might be in order.

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I completely agree Cruiser and thanks for your input. Fortunately, or not, my oncologist is moving in June so May is my last appointment with her. I will have a new one then and can get a second opinion. I will miss her....she has been my onc for the entire time but maybe change is a good thing.

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I've never heard that either. But my onc said that if my current treatment fails i will have to go back on iv chemo as I've exhausted all my other options.

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I'm so sorry to hear that My3girls. Also surprised since new treatments seem to be coming out every week or so. I wish you the best of luck in your treatments!!!

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Thank you, i was a littled shock when she told me that also. But hopefully the xeloda will work for a long time. Hope your doing well.

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When my chemo pills quit working, we just go to the next one. Chemo is a last resort, with my doc. I'm on Afinitor/aromasin now. If that suits working, we go to xeloda. I would ask your onc about this. Stay strong!

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thank you so much Suzesunshine. Like your name!

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I’m pretty new to stage IV. I did not have chemo when I was stage 2 because it only showed a 2% benefit. My oncologist has not suggested chemo yet. Although, my xgeva and folsadex are coded as chemo on invoices. Then the Ibrance came in a ziploc bag from my mail order pharmacy in a bag that said “chemotherapy”.

Definitely wait for the second opinion. Also, I read it’s good to get involved w clinical trial earlier. I was motivated when I read a story on the radical remission site. A woman did a stage 4 trial 18 years ago and has been NED ever since. She didn’t know which trial it was. She said it was an injection. But, it gave me hope and interest!

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Hi Alice!

I’m back on Perjette again after a year and a half off...numbers slightly elevated to 150...I’ve had 3 so far but numbers have dropped below 100 now so probably not to many more...mine is a targeted therapy so no real side effects...if your numbers are slightly elevated I’d ask for a different chemo if that last one was tough on u...😀

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good idea. Thanks Rhwright12!

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I had Doxil for 6 months, last 3 months not bad. The Ibrance seems strong for me. I was only there an hr. It brought my index down 400 points. I’m sorta new to mbc found out last summer. I would read as much as I could and ask why more IV Chemo. I always ask and ask. Good luck keep us posted. Thanks

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Is Doxil a chemo treatment?

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Yes, very strong they call it the Red Devil. It literally gives you a tan and your skin peels. I mostly just got tan. In the beginning I got very sick and tired. As my treatments went on I was better. The Ibrance lowered my blood work more then strong IV Chemo. I also see for 21 pills of Ibrance it’s 7k. My oncologist office payed for it, and I have good insurance. I really don’t know how most pay even with good insurance because you still have to pay co-pay. I have a whole bottle I’m off right now because my wbc. So I will see what happens.

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Afinitor is the same. I had to pay $3000 in Jan and Feb as a co-pay and I now pay $735 a month for the rest of the year. Ridiculous.

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Wow, there’s no way I could afford that without draining my retirement. Have you considered the plans the big drug companies have. Since the drugs are for you they go by what you make and it’s good. I’m not working being a Nurse I take pain medicine I would not feel comfortable working. So unless your making over 75k they go by cost of drugs. My husband has MS, you wouldn’t know it but his rebif is free through the MS society. One shot 5k and I give him 2 weekly. Also check the Cancer society programs,. I hope this helps. Being a Nurse you sorta know programs. I got him his rebif free as he was paying like you. Good luck 👍

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thank you Claire. I will definitely check some more. I had checked a few and they wouldn't help if your combined income (both mine and my husbands) was over 20,000.00. Unbelievable.

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Oh no something is wrong. You should only use your income, and did you check the drug company that makes your chemo drug? Mine has been paid by Northside of Atlanta who I go to. Please keep checking they are not going to want you to not take your medicine because you can’t afford it. If something happens to you because they refuse you help they are afraid they will get sued. I only use my income they don’t check taxes so just use your income. You have to do what you have to do sometimes, not illegal. Good luck keep me posted!

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Did you consider getting your tumor sequenced? Also a second opinion with a Brest cancer specialist and a big cancer center is always a good idea. Possibly, if you had Tumor sequencing that you would be able to get into a clinical trial. Maybe on the new immunotherapy

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Thanks. I hadn't thought about that but it's a great suggestion, blms!

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I have heard of using low dose Estrogen to "reset" E + mbc after several hormonals have been effective and eventually failed. Cancer cells do tend to mutate over time, which is why most of us are not able to stay on any one drug "forever." But I have always heard that chemotherapy tends to not be very effective with hormone receptor positive bc. I agree that seeing a bc specialist onc is always a good idea, at least for a second opinion. The top cancer centers in the US are those designated "Comprehensive Cancer Centers.' There are quite of few of them, spread out across the country and they are listed on the National Cancer Institute website. I was diagnosed with denovo mbc, bone mets, E + P+ her2neu - 14 years ago and have never had chemo, or radiation. I've done extremely well and have never had pain from any of the bone mets. I've had 3 minor progressions and just started on Aromasin about 3 weeks ago. Too early to tell if it is going to get those blasted cancer cells back under control. I've met a number of women who have lived over 10 years with mbc and one who was a 30 year (!!!) survivor, who attended a conference of the Metastatic Breast Cancer Network several years ago.

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I'm just finishing cycle 7 of Ibrance/Letrozole after being diagnosed MBC in October 2017. My oncologist told me then that if the Ibrance/Letrozole quits working, chemo would be next. I am post-menopausal/age 71 and wonder if the other drugs are for younger women--that was the impression I got when she talked about chemo. Being new to mbc, I didn't ask questions then and the topic hasn't come up again since so far the I/L is doing its job without many side effects. (My original stage 2 cancer was 22 years ago--had chemo then.)

Re cost of Ibrance, I have Medicare insurance and a good supplement. Specialty pharmacy prices the Ibrance at $13, 553.69 per month ($645.41 per pill)--who can pay that?!? Thankfully, the doctor's office found grants that are covering the cost. First one was for six months and now a different one for six months. A little nerve-wracking if I start wondering what happens after that, but I trust God and thank him for his provision.

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I don't know about age. I am 75. Have you taken a lot of different drugs. My onc said there were many many more drugs to go. She is thinking of the chemo, as I said, as a "reset" and then continue on the other drugs. I will certainly ask more questions before I agree. She did put it as a suggestion at this point.

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Like many of the other replies I have not heard of the reset bit but then my Oncologist worked on the principle that when 1 drug stopped working we moved to another. I had radio right after mastectomy and NO chemo. First Tamoxifen then Letrozole stopped working over a period of 3 years during which I presented with a liver met so Stage IV. She then used Xeloda for almost a year before that stopped working and I moved to Navelbine for 4 months - still progression. At that point my Medical scheme approved Faslodex - but no afinitor or Ibrance - both too expensive for my scheme (and I could not afford them at some R45000 a month at the least! Pensions do not run to that here in South Africa!

It is an iniquitous amount to charge) Faslodex did not work either and the liver met has grown quite large now. My oncologist has said since I am still asymptomatic Chemo would just give me a lousy quality of life so am now on nothing till things change at which point I can look forward to all the horror of chemo I guess. Fingers crossed it doesn't progress too fast.

I would be inclined to ask a few questions. Good luck

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Hi IzzyF....them "lousy quality of life" is exactly my problem with even considering the chemo. Also, the chance, even though it might be small, of permanent damage from the chemo. Have they tried the "laser" surgery with your liver met? I have wondered about Xeloda as my next step. How did you tolerate it? Hopefully it is not too bad. Good luck Izzy!

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