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Need your tips for taking a CDK 4/6 inhibitor

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  • filabrasileiro
    filabrasileiro Member Posts: 7
    edited March 2020
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    I have been on Letrozole and Ibrance combo for 18 months. I take it every evening. 2 days ago I was researching Disulfiram as I had been interested in adding it and I was suprised to read a report that this inexpensive drug enhances the effectiveness of both Ibrance and Verzenio!! I plan to add this to my regime ASAP. I was diagnosed stage IV but my original tumor died, auxiliary lymph nodes now appear normal and 2 largest of my bone mets are dead and now bone is filling in again. I had a tiny active lesion in 1 rib. I am interested to see if Disulfiram will help enhance Ibrance to kill it (or work on its own merits)

  • vlnrph
    vlnrph Member Posts: 487
    edited March 2020
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    As a retired pharmacist, I am always interested in the repurposing of older medications. Antabuse being the brand name for disulfiram tells you what it’s original use was: providing an antidote to alcohol abuse.

    It creates an extremely unpleasant reaction in anyone taking it whenthey consume any amount of an ‘adult beverage’. There are warnings about ingesting cough syrup and even using hand sanitizers! So, you need to be very careful and read labels on every product. There are also a number of drug interactions of which to be aware.

    Doing a quick google search, the references I located regarding the anti-tumor activity of this chemical date from 2013. If the compound was as beneficial as you seem to think, it would probably have been added to our regimens by now. Can you provide a link to the information you found?

  • kanga_roo
    kanga_roo Member Posts: 302
    edited March 2020
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    I have been on the Kisqali/letrozole combo for over 2 years.


    Before:

    Read possible interaction with drugs or supplements you may be taking.

    If it is possible, take the letrozole for 1 week before you start the kisqali. That way, you will not confuse any side FX of the two. Make notes of any symptoms, eg hot flashes, aches, pains etc. if tolerable you are good to go with the kisqali.

    During:

    Take both at the same time - experiment with what is best for you. I take mine after dinner.

    Review any side FX. This may include nausea, skin irritations etc. l had to reduce my dose from 600mg to 400mg which seems to still be just as effective.

    Your week off is when your white blood count is at its lowest. Take care of yourself and keep away from sick people, particularly now with the Codvid19.

    Take your notes with you, and write down any questions you may have for your next visit with your oncologist. For example, one of my questions was related to my concern about healthy bones. My oncologist suggested I take extra calcium and Vit D.

    Join one of the threads here; I have found the kisqali one very helpful, and it is comforting to share and compare progress with others.

    Just my opinion:

    Kisqali combo allows you to lead a fairly normal life, so get on with it if you can. Eat sensibly, sleep well, get a bit of exercise and sunshine, and do as many of the things you usually do.

    Jackie.

  • HopeandGratitude
    HopeandGratitude Member Posts: 520
    edited May 2020
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    Have been on verzenio now for almost 9 months after ibrance for about 4 months. Had to go off Ibrance due to ANC issues. Was ok on verzenio 150 mg 2x/day until I started xgeva and faslodex, then my tolerance for verzenio seemed to plummet - persistent Grade 2 (borderline Grade 3) diarrhea even with maximal support for about 2 months. Might just be temporal association or there might be some sort of interaction. Dealing with that through a dose interruption (I feel human again) and then a lowered dose (and pray I can tolerate). So, just bear in mind that getting used to these drugs is not just always in first month or two. Do not be intimidated to say something if your side effects are getting worse. Dose reductions are possible and they are also still active against the disease.

    ONE very important point for all newbies - moderators maybe make a note here!! I was conversing with folks on the verzenio thread. When I first started Verzenio, my husband installed one of those toilet seat bidets. He has wanted to try one anyway. Fairly simple to install and not that expensive. It has really saved me much suffering and discomfort for those many consecutive days and hours...for MONTHS....when I was shackled to the toilet bowl. I haven't heard much on this, but I feel we really suffer enough and anything that can help us feel more comfortable and more healthy is worth considering. Patients should consider this if they are on verzenio or if diarrhea is an issue on the other inhibitors.

  • Japgh
    Japgh Member Posts: 1
    edited May 2020
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    emac877, so sorry to hear your report - will pray for you so you can continue to work! The drug prices are obscene and yes help is available from these companies which are given thru grants from nonprofits who have tax benefit# that may be set up to flow to the drug co &/or their sponsors. Always ask if the drug is also available as a generic. Also ask if their are other drugs that insurance company is requiring 1st as you have found out and research your case know your symptoms, your allergies, other health issues, and propensities for treatment and whether the adverse effects from the drug are reversible if you get them. It is my position that one should have certain rights in these kinds of decisions. As there may be a good reason why you should not be on that drug AND more importantly one may not want to run the risk of permanent adverse effects from the drug the insurance co wants you to use first. The price on Verzenio was $2500 per month and Afinitor is $14,988.00 per month, and if one is on Medicare one should ask what Medicare or the Medicare advantage is paying. We do not ask these Qs bcz we have insurance - but we should ask up front. My path is showing me much about the issues in this area as well as treatment protocols and I keep asking why we are not advancing toward cures. I pray that you get divine direction on all decisions that you have to make. My best to you.

    PS. In 2011 I had a radiologist tell me that there had been findings that radiation after breast cancer surgery was causing cancer in the perimeter of the irradiated area 20 years out. A resident md told me that was not true and when I asked the radiation oncologist he said Yes that is true - so I opted out of the radiation. Had a friend who 20 years post radiation trtmt was diagnosed with breast cancer in her lungs. She decided to forego further treatment. Two years ago my cardiologist asked me if I had radiation post breast surgery (lumpectomy after neoadjuvant treatment with Arimidex of 5.2cm lump that resolved the lump by 97% within 9 months!!!). Cardiologist said good now they are finding that the radiation has affected some patients' hearts. So just BE DILIGENT and ask every Q that you and your family and friends have or can think

  • moderators
    moderators Posts: 7,912
    edited May 2020
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    HopeandGratitude, note taken! Fabulous idea with the bidet.

    Japgh, thank you for sharing your experience. Not every treatment is for everyone, and indeed you need to advocate for your self, ask lots of questions, talk with others and get other professional opinions.



  • Kathylou2u
    Kathylou2u Member Posts: 30
    edited June 2020
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    Thanks for your information. I start Kisqali in July. I’ve been on Letrozole for a few months. Doing ok with it. Just a bit worried about adding Kisqali. I work full time and hope it won’t interfere with my job. Hopefully I won’t lose my hair. I’m sure thin I g is a given though. Thanks agsin

  • lafsunshine
    lafsunshine Member Posts: 50
    edited July 2020
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    Hi-I am new here. I recently found out that my breast cancer has now metastasized to the liver. I have spoken with numerous oncologists, 2 want me to take Ibrance with letrozole and 2 want Ibrance with faslodex. Not sure what path to take, if one combo is better than another.





  • sadiesservant
    sadiesservant Member Posts: 1,875
    edited July 2020
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    Hi lafsunshine.
    Sorry you find yourself here. in my case, I had rapid progression on Arimidex (letrozole) but I had been on it for three years as part of my adjuvant treatment. That may have had something to do with the durability of my response. Many do well for a long time on that combo. Faslodex has been great for me though... 2 1/2 years and counting!

  • moderators
    moderators Posts: 7,912
    edited July 2020
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    Welcome, lafsunshine-

    We're so sorry you find yourself here, we know this is a difficult time. But we hope this community can be a source of support you, as you continue on this journey. You are definitely not alone!

    The Mods

  • lafsunshine
    lafsunshine Member Posts: 50
    edited July 2020
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    Hi Sadiesservant,

    Thanks for sharing your experience-it gives me hope! My original breast cancer was in Jan 2018- IDC,Stage 1, grade 2, 1.5cm, 0/2 nodes, ER+ HER 2-, ocno type score 18. Treatment was lumpectomy, radiation and Arimidex. Now it has metastasized to the liver-go figure. Still trying to wrap my head around my new Dx. It’s great to hear you have positive results with faslodex!

  • Aussieguy
    Aussieguy Member Posts: 5
    edited May 2021
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    Hi, this is my first post to this thread. I'm a male with Stage 4 breast cancer, with mets in the bone (spine, ribs, hip) and lungs - the mets were diagnosed in January 2019. I was treated with radiation on the spinal tumours on diagnosis. I've been on Letrozole and Kisqali for a little over two years now. I've found the combination easy to take, and have had few side effects, none serious. A bit of fatigue, some stiffness. The most demanding thing has been having to take Zoladex to accompany these two - in men, it has the effect of chemical castration, which is pretty depressing (men produce oestrogen via testosterone, so the idea is to reduce testosterone production - the idea is to simulate the situation of a postmenopausal woman). I also take a bone-strengthening injection as the treatment makes me susceptible to osteoporosis. Fortunately in Australia the cost of Kisqali is mostly borne by the government, so I pay a small amount each month for my prescription. In the last 5 months my disease has been progressing, and I have had to have radiotherapy for a growing lung tumour which threatened to cause a partial lung collapse. But the progression appears to be slow, and I'm still feeling really well. I have had a very positive experience with the Letrozole/Kisqali combination, and have managed to avoid chemo in all this time. I'd love to hear from other men if there are any on this thread - we are a rare breed in the breast cancer world.

  • spookiesmom
    spookiesmom Member Posts: 8,168
    edited May 2021
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    search for TravelTex, he is in Au and is stage 4.

  • buttonsmachine
    buttonsmachine Member Posts: 339
    edited May 2021
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    Hi Aussieguy, I'm sorry you've found yourself among us, but welcome. As Spookie mentioned TravelText is one of our men who has been around here for a long time, and he is a wealth of information. Best wishes to you!

  • nola70115
    nola70115 Member Posts: 61
    edited June 2021
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    Aussieguy, welcome, and I’m sorry you’re here. It does seem especially unfair when breast cancer strikes men. I mean, what the hell? Is nobody safe from this thing