MBC Progression

[equavel]

Living with progressing MBC

[Hidden]

Hi equavel -

Are you saying that you've had recent progression? If so, I just want to say that I'm sorry to hear that...

Take care,

Lynn

[equavel in reply to Hidden]

Yes

And I have refused taking Piqray or Xelida

[Hidden in reply to equavel]

Equavel - I am sorry to hear this. It is a gut punch as I keep saying. May I respectfully ask why you refused those particular meds?

[equavel in reply to Hidden]

The side effects are horrendous...they will keep me from living ...and essentially, lookig at the research may give me a few more months....it does not seem worth it

As I have said...i want to live as opposed to be kept alive

[Hidden in reply to equavel]

Thank you for sharing your perspective. I completely understand and respect your difficult decision. I am sending much love and support.

[Hidden in reply to equavel]

Hi Equavel, Thanks for your response...

I also completely respect your decision about the medications. It's a balancing act and each of us can decide what's best for us. The meds obviously help prolong "life" but they are just part of that...There are women who live very long with no medications and others who succumb quickly in spite of aggressive treatment.

I do have one question, if you don't mind...Have you tried these medications and found that the side-effects were too difficult or did you look at the information or maybe hear from others that they were difficult?

I'm queued up for Piqray at some point and I know the side effects can be very challenging, but I'm sort of assuming (hoping) that I'll be one of the lucky ones who doesn't really have any problems...I'll know that only after I try it for a while... But it is helpful to learn about other people's experience.

Take care,

Lynn

[equavel in reply to Hidden]

I have read up on the medication and I’ve talk to people who are using it

I did toy with the idea of trying it out but in reality I am typically very sensitive and react strongly to medication and I just prefer having a good summer

[Hidden in reply to equavel]

Sounds like a solid plan! I hope it's wonderful! 💜

[SMPG in reply to equavel]

I am one who is extremely opposed to meds in general since I am afraid of side effects. So, when it was suggested that I take Ibrance, I was horrified because I had read the info and was terribly scared. However, my oncologist said that she could start me at the lowest concentration and for less time, two weeks on and one off instead of three weeks on and one off. She said that I should try it and see how it went and then make up my mind. A pharmacist there (from Dana Farber in Boston, where I go) said that even aspirin can scare people away with the list of possible side effects. So, I decided to give it a go. I was already on Letrazole and I had not experienced much in the way of side effects. I designed my own protocol with Ibrance. I told my doctor that I wanted to start at 75 mg one week on one off and then two weeks on and one off and then three weeks on and one off. I am still a newbie at this since I am at this stage now, the three weeks on at 75 mg. After this, my proposed protocol for myself is to advance to 100 mg and do the same, one week on, one off, two weeks on one off and three weeks on one off. After this, if I am still tolerating it well, I would progress to the 125 mg and do the one on one off, two on one off, three on, one off. And see what happens. My idea was that I wanted my body to gradually get used to this, acclimate it, not shock it from the get go. I know that usually the doctors want to be very aggressive from the beginning and then, if the patient does not tolerate it well, to reduce both the strength and/or the number of weeks on and off. To me, it seems that I don't want to suffer through side effects. I don't want to make my life harder. It seems to me that in general we are too scared of the dreaded word cancer and want to do something aggressive and we suffer stoically through side effects in the hope of more life to live. But this is suffering in the present for the hope of something that is not assured. At least this is my point of view.

[NamasteLove in reply to SMPG]

Hi there,

I, like you, did not want to take Ibrance. I eventually ended up giving it a go. Started with the highest dose- did not do well with that. Dropped down to the next dosage- did not do well. Eventually ended up on 75mg- much better, was able to tolerate it and it 'worked' for a few months. My oncologist informed me that the dosage level does not affect the efficacy of the drug. Which made me frustrated that I was not started on the lowest dosage to begin with. I agree with you about not 'shocking' the system with high doses of these drugs to begin with.

Kudos to you for designing your own plan. We are not all 'one size fits all' and I agree that medicine/treatment should be more personalized.

Best to you.

Nama

[8576 in reply to SMPG]

I applaud your plan. I thought about that also. Why go with the heaviest dose when a lighter one will work. It can always be increased if necessary. Thanks for sharing your experience.

Cheers, June S.

[Barbteeth in reply to 8576]

Hi June

I’ve always thought that...I had to reduce doses of Ibrance and everolimus...I’ve never understood the process...why put patients through hideous side effects when a lower dose is apparently just as effective

Barb xx

[MacroMom]

I hope you don't mind but I looked back at your previous posts and noticed that you had looked into Mistletoe. Did you end up trying that? I know it can be hard to get in some places. I just want to share that I've been on it since late February. Like you I seem to be very sensitive to drugs and supplements, and I'm now getting a good immune response to Mistletoe on just 1/2 of the lowest 1mg dosage. I started it about the same time I began Abraxane (IV chemo) so there's no way to really know what is helping the most but my cancer markers are dropping a lot, blood counts are pretty stable and I feel very well. I too have liver mets...lots...and quality of life is as important as quantity. I was on Xeloda before Abraxane. My oncologist knows about my sensitivity so I was on a low dose and shorter schedule of Xeloda and really didn't have many issues with it.

One thing I learn every day from this site is that we are all so very different in the way we react to therapies, in what is available (and affordable) in our area, and in what "quality of life" means to us. I hope you feel supported in your choices, both here and with your family and friends. Here's to a good summer!

Patty

[equavel in reply to MacroMom]

Hi

I did look into mistletoe....I have a Swiss friend and a French (from france friend) both of whom have medical backgrounds and what I found our is that it could not hurt but that there was nothing confirming its usefulness. In Canada you can only get it through Naturopaths who also want to involve you in other protocols...I lost interest

Good luck!!

[Hidden]

Hi Equavel

I hope you have found some peace with your decision. I know it is a decision I am sure I will have to make at some point.

I agree in living with a good quality of life. You deserve that.

I hope your summer is filled with love and laughter.

Clare x

[PJBinMI]

I sure understand valuing quality of life over length of life! And it sure is impossible to know how any particular med is going to impact us. I hope you have peace of mind and that your onc is willing to work with you. Keep us posted and know that alot of us here want to be here for you. SEnding love and cyberhugs and prayers......

[Timtam56]

I totally respect your decision and will/would do the same if and when I get to big decision time. I believe in quality not quantity.

Enjoy yourself to the MAX equavel!

Don't let anyone stop you from doing it YOUR way. ❤️❤️❤️

[mariootsi]

I feel for you, but you are the only one who can make the difficult decision to refuse treatment.

I pray you do well without it.

Love,

Marianne

[Hidden]

Hi equavel, I hope you're doing well...I have to admit I was confused in my earlier responses.

It looks like you posted two days ago that you're starting Faslodex...I was apparently mistaken in thinking that you had decided to forgo traditional treatment altogether. I hope you do well with the Faslodex, I've been on it for 20 months, no real issues...

[equavel in reply to Hidden]

The drus that I refused are : piqray and Xeloda

[Hidden in reply to equavel]

Thanks, I get that now....I was being thick-headed, I blame the meds + age! Sorry for the confusion...

[hdhonda]

Best of luck. A lot of people have had good luck with Faslodex. I haven't taken it. I am on Ibrance/Letrozole. Blessings, Hannah

[LotusAFlower]

Your post breaks my heart.. I wish for you more good days ..

[Hidden]

I’m sorry to here if the progression. I just found out mine had progressed and I will be starting Chemo soon. Do you mind saying where your Mets are? If you would rather not I understand. Is there anything you will be taking (Letrozole or another hormone suppressor) or are you going cold turkey? I hope that you are feeling well physically.

[equavel]

My Mets are bone and likely liver... just waiting for a ct scan

[8576]

Wishing you well, of course, and hoping you will feel like keeping in touch and letting us know how you are doing. Hope by end of summer there are some new miracle drugs for us.

Cheers, June S.