hope is the thing…

[Dragonfly2]

from another cancer blog…another potential cancer drug is in the works and going to clinical trials .

etirarx.com/

Fingers crossed, people. There needs to be a breakthrough for this cancer terror. I’ve lost too many friends and feel like I’m swimming up stream.

[Nocillo]

Swimming upstream is right. I’m lucky, my main issue is fatigue and, of course, the mental battle. The other day I just got SO TIRED of being tired, I started crying. I’m so grateful for the medicines, but it’s a lot and no one really has a clue except all of you. Thanks to all of you for being on this site.

[Dragonfly2 in reply to Nocillo]

yes, I know exactly how you feel…I’m worried that IBrance is starting to not work…so I’m feeling desperate…the fatigue is awful but the alternative meds are scaring me me….😢🥰

[Fiercefighter13 in reply to Nocillo]

Hi Nocillo, I am right there with you. I'm starting my 6th month of Xeloda and grateful beyond words that it is working after failing many treatments no where near the "average" I should have gotten from them. But the fatigue is torturing me mentally and emotionally. I have broken down crying twice this week because I feel like I'm not showing up for my own life. All the things I used to to and enjoy are a huge struggle and I find myself dead asleep on the couch every afternoon. My doctor prescribed Ritalin but it barely makes a dent on things. My big dog is missing her long walks with me and my little dogs have decided to curl up and sleep with me when I conk out in the afternoons. I'm glad to be alive, but this doesn't quite feel like my body anymore or my life.

[Nocillo in reply to Fiercefighter13]

Exactly! I’m in bed right now. 😩

[TammyCross in reply to Fiercefighter13]

I just went through two months of such fatigue it felt like I had the flu. When I lay down, I had a headache unlike anything I had had before. I felt like giving up -- but I wasn't ready to throw in the towel. I did cry; so weak, so useless. I would do one thing, sometimes something fun, get through it, then barely make it home and back to bed. It was a depressing way of life.

My oncologist thought it was progression so I had a PET/CT. Nope, it was side effects of anastrozole + abemaciclib. I was talking about getting Ritalin, and made an appointment with what I thought was integrative medicine, but it turned out to be with a spinal pain doc; wrong place and I haven't started trying to find the right place again. I spent months getting what I thought was the right appointment. I just don't have time for these things.

Somehow, though, it has lifted. I feel okay if I sleep 8-9 hours at night, and take a one hour nap in the evening. It is a lot of sleeping! I have short windows to be productive or have fun, but at least I can. At least I don't feel so sick. These side effects are a mystery; they come and go, and change form. Seems like oncologists are not so good at managing these -- just refer out, if that. I also began taking B12 supplements; turned out my B12 was low for the first time in my life. I wonder if that is what helped turn a corner. It is no way to live. But it may be transient.

[Fiercefighter13 in reply to TammyCross]

My oncologist has me scheduled to check my blood work for vitamin D and all the B's and my thyroid this coming month with my routine blood work. I had them checked about 6 months ago and they were all o.k., but maybe now they are not? My oncologist just had me start on Cymbalta for the neuropathy pain and inflammatory pain Xeloda has unleashed on me and it may also help with the fatigue. I'm hoping it helps. It's so hard to show up to life when we are down right falling asleep standing up. I'm glad that you are feeling better and I hope that it settles down for me as well. I never had any side effects from any of my other treatments so this is startling to me. Then again, none of the other treatments worked really well for me either so I guess I should take Xeloda working well with it's side effects all in stride. I would love to see some new treatments get approved that don't have such harsh side effects!

[GratefulThriver in reply to Fiercefighter13]

During covid, I requested Vit D3 test and found that I was severely deficient at 4.5 when bottom of normal is 30 and top of normal is 100. Vit D3 is a major player in bone health and deficiency has been linked to breast cancer. Yikes!! This might be the key to my return to being free of the C word...and others' return too. I started taking 1000 IU not every day and I am up to 27.5 now...though I may need 2000 IU with strict daily usage.

[Fiercefighter13 in reply to GratefulThriver]

Hi there! Thank you for your reply, it makes so much sense. I do take 800 IU of vitamin D3 with my calcium maleate tablets, and I also get another 450 IU in the cod liver oil I take every night. I hope that this is enough for my body. I live in a rainy state so it is easy to be vitamin D deficient, and it is indeed crucial to overall well being. Take care!

[Kahe in reply to Fiercefighter13]

Dear FF, I am so so sorry you are feeling so low....of course you are ...what an awful disease this is , fear walks with us every day. I have come through a bad patch, just like you are having now. If there is anything I can do to help, pls reach out. Hope today is a better day for u, hugs ,K

[Fiercefighter13 in reply to Kahe]

Thank you Kahe, it's good to not feel all alone on this road and journey, although I would never wish this on anyone. I appreciate your kind thoughts so very much! I'm sure as you know, some days are better, some worse.....but we keep fighting and hoping for the good days, for new medicines, and for peace.

[kokopelli2017 in reply to Nocillo]

I hear you💛

[love2golfwell]

Thanks for sharing this. Going to read about it later. We definitely need more tools in the tool box, but we need ones with less side effects for sure. Hope you are doing well. Sending you some hugs.

[Dragonfly2 in reply to love2golfwell]

thank you…we all need that thing with feathers…❤️‍🩹❤️‍🩹

[fancydog]

I will read later, those stats just infuriate me and I am not even in those numbers! Only the people diagnosed De Novo are being counted or has this changed?

[Dragonfly2 in reply to fancydog]

I don’t know about the stats…I wonder why they would count some and not others 🤷🏼‍♀️🥲we are all fight the same battle… 🥀

[fancydog in reply to Dragonfly2]

The many folks who had a previous Stage of Breast Cancer then it returns at stage 4 are not even being counted in these stats! If you look at your own list of Diagnoses you will see Breast Cancer Stage 2(for me), then later in your list it may or may not list Stage 4 Breast Cancer. But we are not being represented in data at this point in time because of Diagnostic coding regimens which Insurances use. I believe this is still true because at the LBBC conference I recently attended featured in the Vendors room a group that continues to try to get this all changed! The last updated Stats are from 2005! We ALL believe we are living longer, even My Onc admits she thinks people are living longer but there are no stats to scientifically prove it. I began participating in a longterm study early on named the " The Metastatic Breast Ca Project", it has now joined with "Countmein". I was sent a kit to do a cheek swab and sent it back in their prepackaged, postage paid envelope, periodically they check back with me to keep track of my current status. The data being collected in this program has been shown to be accurate even with self reporting and IS being used to drive some R+D, thus YES we have HOPE!!!

[Dragonfly2 in reply to fancydog]

Yes, for sure I was a stage 2 in 2003 and stayed happy and oblivious until 2020 when it showed up in my ilium. Thank you for your work to change the status reporting. I hope new clinical trials help us all to live longer and better. 😘🥰

[fancydog in reply to Dragonfly2]

H🙏🙏🙏

[TammyCross in reply to fancydog]

Which stats? I followed the link and it just had numbers of people with three types of cancer, and how many would die. Is that what you meant?

Every time I check the survival stats for MBC, they are so bad. The last one I read was 27% survival rate at five years. I am in my fifth year, and seem to be okay. They claim to be up to date, but the np says the survival rate with new meds is much higher.

[Dragonfly2 in reply to TammyCross]

stats… I have always felt that they never tell the whole story. Stats are comprised of a variety of people , some who have not had access to medications snd treatments. Nor do they take into account those who have had a long brewing cancer that was discovered late. My DiL reminded me that statistics are just numbers that rarely reflect an actual individual. Hang in there! We are living longer with treatment. 😍

[bracelets1]

Thanks for sharing - looking forward to reading. Always great to have hope and another tool!

[Dragonfly2 in reply to bracelets1]

yes! 🥰

[mariootsi]

Swimming upstream is a good explanation of our situation! I'm praying for a breakthrough with new drugs but they take so long to approve!

[TammyCross]

Sounds great -- but they are trying it for triple negative. So good for that resistant, hard to treat type of mbc. (Not for most of us.)

[GratefulThriver]

Is that drug TTC 352?

[Dragonfly2 in reply to GratefulThriver]

it’s ERX-351 and ERX-41…mostly for triple negative cancers