Afinitor broke me

[LisaT23]

Hi,

I was on 5 mg Afinitor, we tried 5 mg - 10 mg every other day but I couldn't handle it. She ordered 5 mg 7.5 mg every other day, but my blood-work came back before I started the 7.5 so she said to wait.My blood sugar was 337! I just started the metformin on 8/22, and had blood work Tuesday sugar still very high and triglycerides were over 1000. Metformin increased to 1000 twice a day. She then sent me to an Endocrinologist yesterday.

Endo said stop metformin, started me on insulin!! More blood work yesterday. She ordered meds for lipids, but is limited because my liver enzymes are high. Blood sugar was 186 this morning. Endo called 7am and said my potasium was low, more blood work this morning! She researched the Afinitor and high blood sugar, high lipids, and high triglycerides happen in over 76%.

Canceled my PET scan yesterday, blood sugar was too high and they would have just turned me away. Rescheduled for Wednesday hoping sugar is lower, but Endo thinks that will be rescheduled as well.

Hoping that this will all correct itself once the afinitor is out of my system, could take 2 weeks.

Lisa

[Francesca10]

Omg Lisa. So sorry you are going through all this. We never know what side effects we will have and it can become overwhelming.

I had escalating allergic reactions to ibrance- long story short- here it is almost two months later and on steroids all that time without any treatment- finally rashes fading away. Now have to start xeloda. I am sure you are as wary now as I am of new drug. I am much more pro-active in what I will, will not do.

And now I know to stop the drug when it gets dangerous. Doc kept me on it , saw allergist- loaded me with antihistamines, steroids just to take ibrance. Well, last reaction in July was extreme- hives, rashes all over. Enough. So now I know better.

Feel better soon- takes a few weeks for drug to leave system.

Take it easy for now; lots of water.

Banana every day. Rest. Recoup.

♥️♥️🙏🏻🙏🏻🙏🏻

[LisaT23 in reply to Francesca10]

Hi,

Once I am able to get a PET I will probably end up on Xeloda as well. Doc said it would probably be next med. I am only taking tje exemestance for now. Not sure it is doing any good since my markers keep going up for the past 3 months (whole time I was on afinitor and exemestance) anyway. I am afraid of the Xelooda too. Not sure what to expect. She wants to fix me first. Just said there is protein in my urine, probably from the crazy high blood sugar and triglycerides, only so much kidneys can handle,

Lisa

[Francesca10 in reply to LisaT23]

Let your body heal first. It is 2 months I am off treatment now and just beginning to feel ok. My body took a beating from the drugs, steroids, stress, overload of antihistamines, sciatica and now uri. My dr wants me better so he put off starting xeloda till this week. I have done all I can to prep for it. I have no idea what my ca 27,29 is now. I have had pet scan, mri, x rays all since July. At this point I cannot give in to the dark thoughts- that I can control somewhat . How my body reacts to drugs is out of my hands. A great part of it all was mental and emotional stress. I don’t want to go there again.

Let your body heal. 🙏🏻🙏🏻🙏🏻♥️♥️♥️Rest your mind.

Frances

[Mets1 in reply to Francesca10]

As you know I am currently off all medication due to progression. I’m scared. I will likely be moving onto Xeloda, but what if that doesn’t work either. I came across a website called Chris Beat Cancer. I get emails from time to time, but didn’t join the community and still haven’t. He is playing his cancer coaching 10 video series for free this weekend. It seems like a lot of what he says makes sense. I am learning some things. For example, I was juicing, but not anything like what he did. I was vegan, but when I went to the nutritionist at the cancer center they recommended I not skip any food groups. I added back grass fed meat. He also talks a lot about natural supplements, the importance of exercise and recommends rebounding. Anyone else watching his videos or members of that community? If so what are your thoughts?? Thanks!

[Francesca10 in reply to Mets1]

Honestly, I have not changed my diet or joined anything other than here and therapy.

Xeloda will be a challenge- it has to be on full stomach twice a day spaced as far apart as possible. No heavy walks, have to soak feet in cool water at end of day then apply lotion. I love my night epsom salt baths so now??

I am sorry I have no other feedback to give. I am sure others will share their ideas with you. ♥️♥️♥️🙏🏻🙏🏻🙏🏻

[Mets1 in reply to Francesca10]

I’m not happy with the having to have two full meals a day!! I have been doing intermittent fasting and down to a normal BMI. Grrrrrr!

[MacroMom in reply to Francesca10]

I still take lovely epsom salt baths Francesca, but with my hands and feet sticking out of the water! And I take Xeloda after a breakfast of porridge...oatmeal, polenta, rice....I wasn't told "full meal", just take it with food. I know we all react differently but I haven't had any digestive issues with it. I still walk (hike!) 30 minutes down and up the steep hill by our house but have cut back on longer hikes because my feet get so hot. When they do I stick them in the sink in cold water. Hoping you and Mets 1 do well on it too!

[Francesca10 in reply to MacroMom]

Thanks for the tips.♥️♥️

[Francesca10 in reply to MacroMom]

What dose are you on?

[Mets1 in reply to MacroMom]

Wow! I love warm showers, Epsom salt baths, hot tub, steam rooms and saunas. They all help relieve my aches and pains. I will miss Have to figure out a work around! It seems as though some have avoided the hand foot issues with one week on and one week off dosing. I like oatmeal on a cold morning so hopefully eating a healthy breakfast I won’t gain weight and can do intermittent fasting perhaps on my days off.

[MacroMom in reply to Mets1]

I've watched his videos and read quite a bit about him. Though some of the things he talks about have obvious value (eating more greens, juicing, some supplements, exercise) I think his overall message is dangerous and misleading. He "cured" his cancer after having surgery to completely remove the tumor; he just opted out of the follow-up chemo. And his strong anti-chemo, anti-medical establishment message preys on all our fears without offering a valid alternative. He is a master marketer and is making a fortune online with kickbacks from supplements and links to other sites. (though after a Wall Street Journal investigation his YouTube channel was demonitized). He has no medical background. If you are looking for alternatives to support your treatment, I think Kris Carr's story and books are more realistic and helpful.

Wishing you all the best with your next treatment!

[Mets1 in reply to MacroMom]

I agree with what you are saying and I am well aware of the negative press he has received and why I never bought his book or subscribed to his website. I am also aware that he had surgery and likely he was cured by that alone and very fortunate it did not return. That is often the case with many who say they beat cancer. I did learn somethings by watching the videos and they are free this weekend and perhaps there are some suggestions that could add value that we can do in addition to conventional treatments in case they aren’t working or we are in between protocols. Thank you for the recommendation about Kris Carr. I know many people have recommended her, but have not read her book yet.

[Have-faith in reply to Mets1]

Hi there. I have watched a bit of Chris and seen his book. I do believe a healthy lifestyle like what Chris shares is good for us. I see it this way. If I can eliminate the things that feed the cancer while nourishing what body parts are working well this is a good thing. I believe eating healthy does both of these. I think eating healthy, taking some supplements, being active, managing my stress (type A personality hasn't helped and I think is part of the culprit here) and getting enough sleep has helped me manage my meds without side effects. I have been on 3 regimes of treatment now. Changes took place when markers crept up. Got to stay hopeful, positive and know that there are always more treatments and trials coming down the pipeline. We have to do what we think is best for ourselves, but as you asked I wanted to share my thoughts and experiences. Best of luck to you all. Faith

[Mets1 in reply to Have-faith]

Thank you for your input!

[Red71]

Oh my, what a lot of different variables to deal with! I’m glad your doc wants to get them under control before starting something new but I’m sure it is frustrating when your markers are going up and you want to see them go down. Sending good vibes to your body and your docs! Treat yourself to something good with no calories...a massage or getting your nails done!

[MyMiracle13]

So sorry you are feeling this way. It’s bad enough we have to deal with the disease but to deal with bad side effects as well is so sad.

[Partia]

Sorry to hear that..

[PJBinMI]

I'm so sorry that you are going thru this! I am usually not leery of what our doctors recommend but I have become concerned about how quickly the newer meds, like Ibrance and Afinitor, have been adopted and become part of treatment protocol for those of us with Estrogen receptor positive cancer cells. Trials were done with doses turning out to be on the high side and so that is what most oncs start us on but lower doses are looking just as effectiive as the higher ones. Severe and even lethal side effects are showing up. One of my very dear friends with mbc died from Afinitor shortly after it was approved. She had severe pulmonary failure and none of her doctors associated it with the Afinitor and she was kept on it. She spent the final days of her life in the hospital, having trouble breathing and mostly unresponsive. The hospital she was in was about 2 hours from my house and I was able to visit her twice. I had a bad experience with Ibrance which I was on for 9 cycles in 2016 and have ended up with a lung condition called Interstitial Lung Disease. Both the pulmonologist who diagnosed it and my onc blamed the Ibrance immediately. Both of them left and the other two doctors I am seeing agreed that it was the Ibrance, as did the big name bc onc I saw at U of MI for a second opinion. I am now on two inhalers and when it is humid outside I really struggle to breathe. So I am skeptical of the new drugs that get such hype. As a long termer, I've known alot of women who have lived a long time without those meds.

[kearnan in reply to PJBinMI]

From what I learned from forum boards with women with stage iv, all women have completely different side effects and experiences with various cancer drugs. I know many women (one I had become a facebook friend with) has been on Ibrance for over three years ago (with falsodex). She had cancer when she was younger, chemo, radiation and double mastectomy and 12 years later her cancer returned in her liver. She loves the Ibrance because it gives her a good quality of life (she did not suffer the same side effects as I when I was on it...my week off was hell). She is also on the highest dose but because she has no issues with it, she wants to stay on that dosage. She still holds a full-time job as a elementary school teacher plus, with her husband and sons, runs a full-time farm. Many women do well on the Ibrance but everybody has different experiences. I stopped after three cycles. I found the week off to be over whelming. I am now on verzenio, but the lowest dosage which makes me feel almost normal again. So I am sorry it did not work for you, but for many women, it has extended their quality of life and they are happy to continue to take it. That is why Ibrance, for most, is considered the first line of treatment bc for many women it does work. Google. There was an article I remember reading that Ibrance was approved and being given to women in Japan and I believe several had the same issue you did so Japan issued a warning. But they said it was related to being Asian that some women had the lung issues like you mention. With all these new drugs, you never really know for years if they have any other effects. But without them, we know what the outcome would be. We are lucky to be in a time when there are these type of meds available. I hope you find another med that does not cause you any more problems.

[Have-faith in reply to PJBinMI]

Oh wow. Sorry that you have experienced both of these things you mentioned. Your friends passing and complications from Ibrance. This is such a challenging journey. I do agree there are alot of people living with this disease. Faith

[mariootsi]

Oh Lisa. I feel so badly that you are going through all this!

Hope everything evens out to good bloodwork so you can continue forward!

[Marieleb]

Hi Lisa

I am on my 3rd cycle of Afinitor. In my hospital they stick with 5mg ... According to them the results are just as good and the effects of 10 mg in particular on lungs are just not worth it. It is interesting to read the effect on blood sugar... I have been taking metformin for 6 weeks as part of CoC protocol and had not been eating for 36 hours when I had my blood done last week so expected glucose levels to be quite low but they were normal... May be it is Afinitor...I now remember when I asked advice from medicine team on COc protocols and compatibility with treatment they did say Afinitor might affect metformin efficiency. I hope things gets better for you...I have been feeling quite rotten over last couple of weeks but not sure which one of the numerous medicine I am now taking is the likely culprit.