Yet more scans, and still stable.

[Timtam56]

I think I let you all know somewhere here, that I may have to change treatments, due to my Cancer markers rising all the time. I’m feeling more and more pain. Getting more and more tired. But they can’t see anything changing on my scans. so I will remain on Anastrozole and Ibrance for now.

This is both fantastic, and yet not so good.

The good. I don’t have to get used to yet another lot of treatment that could possibly have really bad side effects. And it still means I am on my first line of treatment.

The bad. I still have to put up with the pain in my hands and wrists, the hot flushes are just so annoying. Really really over them. But……

I’m still here and I’m living an okay life. I’m going to try lessening my painkiller med, Targin. (Slow release Oxycodone) to see if it’s that or the disease or the other meds that are making me so awfully tired.

Sending you all love and hugs.

Chris. Melbourne, Australia.

[SeattleMom]

Hello Chris!! I say good for you!! Keep up the great results!!! 🙏🏻🙏🏻💗💗

[kokopelli2017]

hi chris.

great to hear that on 'paper' all is well. that is great👍. but sorry to hear the pain and fatigue are really getting to you.

I wonder a lot about the fatigue. I have very intense fatigue as well. finding it harder and harder to get off my bed. and women on the board mention it a lot. yet everyone on different meds and different areas of mets. maybe it can't be avoided. maybe it is part of the disease....an actual side effect of the cancer. although opioids can be sedating which doesn't help. I will be curious if your fatigues improves after you lower the dose?

best wishes and sending hugs.....

carole💛🍁

[kkrouse in reply to kokopelli2017]

when I was on Ibrance I could sleep most of the day. It really did a great job knocking down the cancer, but I had to stop due to extremely low white cell count. I still have the neuropathy, pain in hands and feet, but it was more intense when on Ibrance,

[Timtam56 in reply to kkrouse]

Yes. It does make you tired doesn’t it? Damn it about your hands a feet. It seems nothing is side effect free.

[kkrouse in reply to Timtam56]

no, every drug I’ve been on had some. With Ibrance I had every side effect listed.

[Bettybuckets]

Hi Chris- glad to hear your update. I had my pet scan today. And I do know just how you feel. I am of course prepaying for stable and not move meds… but then I have been feeling so yuck and really tired that I think a med change may lead to a bit of relief. My markers seem high to me… 400’s then 500’s then back to 400s…. Cancer lurking around but so far has not been seen increasing on scans. But todays scan result meeting in in one week…. Bracing myself.

You know I have been following you for awhile… love me some Tim Tams! And I just found out that my old rowing team from NZ went to Melbourne to do the race that was in place of the Yarro- which was our dream! And my old team last week just placed second and I am so proud of them!

That is amazing to me!

Beth from waiheke island NZ now living in PLymouth Mass USA

My team!

[13plus in reply to Bettybuckets]

What a wonderful card they sent you! And congrats for their achievement! Hoping for you that your scans are still showing "stable"!

[Timtam56 in reply to Bettybuckets]

Wow. Congrats to your rowing team. Wish you could have come with them.

Yes. I know we have been here together for a while.

I reckon you are right. The oncologist did say that the fatigue could be any of they three things. The meds, the pain killers, or the actual cancer itself. I heard from the palliative team that were with us when my man was dying, that our bodies, (trying to fight the cancer) get so tired from doing just that all the time, and that it causes fatigue.

Let’s hope it’s just that, and we’re putting up a big fight! And it’s working! 🤓

I do already feel a little less tired two days in to dropping down a dose of Targin. So maybe it was that.

[Bettybuckets in reply to Timtam56]

I have never heard of Targin… I have been managing with just non steroidals and celebrex… only taken an opioids on a few occasions. So could only be the verzenio treatment or the cancer. I just want to keep going and not fall apart so that I can go in my summer trip to nz at end of January.

[Claireperth in reply to Bettybuckets]

Targin helps take the edge off, taken usually twice a day and isn't addictive.

[Timtam56 in reply to Bettybuckets]

PS. Love the pic.

[Bettybuckets in reply to Timtam56]

ok I looked up Targin… does it work well with less constipation like the write up I read says.. or is that all hype?

[Timtam56 in reply to Bettybuckets]

It has Naloxone in it. This and the slow release Oxycodone that make up targin means that you take one in the morning and one at night for pain relief.

Copy and paste……“The naloxone component reduces, but does not eliminate, opioid-induced constipation”

I’ve been on them for 4 years. Stared at 7/5 then now have gone up to 20/15. I’m surprised your doctors have not recommended these to you girls for pain relief.

[Timtam56 in reply to Timtam56]

Yes. I think this is the reason for the pain in my hands. But the medication is working on the cancer. So I have to weigh up the pros and cons! 🥴

[Bettybuckets in reply to Timtam56]

hi Miss tim tam.. me again… I have had MBC for 2.5 years and never googled much about my lobular breast cancer… just now saw that only 22% of us have 5 year survival and I am having a panic attack! I feel so yuck most nights so even though I was told my scan was stable, I fel so wretched that I thought I surely can’t live long… or I won’t want to. I don’t have bone pain… just achey but my belly feel like cancer is growing in there. And fatigue is bad… but I managed to play pickle ball today… so I imagine I can get worse. The worse part is it makes me feel grumpy or just not a happy person. Are you feeling like this too?

[Timtam56 in reply to Bettybuckets]

Oh dear….. darling one. You sound like you are having a really bad time right now. That’s the worst part of it in my mind, that YOUR MIND is running riot.

Firstly. I don’t know if mine is Lobular or not. I’ve mad a note to ask my onc as soo as I can do that. I’m having genetic blood tests on Thursday. They will tell me more about my type of cancer for future reference. I never got this done in the beginning because my daughter didn’t think it was necessary. But now I find out that the this will tell me a whole lot about my type of cancer and will help with future changes of treatment. SO….

Secondly. I had to squeeze out of my Onc…. When I asked her many times earlier on…”How long have I got to live?” She was so reluctant to tell me because she said everyone is so different and she was unable to give me a definitive answer. So firstly I say to you stop reading the longevity of other people. But I think innocent you are right because she finally did tell me five years was around about the time she would give me. But she went on to say with her big “BUT”, that for every year I live, add five years in the future after that. So fir instance. I’m 4.5 years in to my diagnosis now. So I still have around 5 years. Do you get it?

I know some of you hear might read this and feel an urge to consol or agar, or site a different research here. But I’m not asking for responses to this as I’m not worried. Betty buckets, this is just for your knowledge and answer to your above question.

I’m most worried that you are frightened for perhaps no reason. Please pm me if you want to talk more. Chris.

[Bettybuckets in reply to Timtam56]

hi Chris- I am not sue how to PM.. sorry to talk plainly here and hope it won’t upset others.. I understand what your onc meant about being 4.5 years in and so then add 5 years.. that sounds like you are doing well and so many of MBC pts are making it past the 10 year mark… but apparently not many lobular cancers are in that category…. That would be a good question for our group….. but I am afraid to ask if no one asnwers that they are over 5 years. I read that only 10% of all breast cancers are lobular- most are ductal … not rare per but much less common…BUT I didn’t realize the outcomes were so different. I had the mutational analysis test hoping for a driver mutation to match to a therapy.. but no luck. It will be good if you have it done and your onc can read the tea leaves to figure out steps to try in the future. I am seeing my oncologist in the morning… I never ask good questions. But luckily my husband will come along this time. He is usually working. My daughter goes and we giggle and are just so happy to be together.. I put in a brave face in front of her and never tell about my fatigue etc. he tells me I’m doing well…but now my eyes are opening!

[kokopelli2017 in reply to Bettybuckets]

sorry to jump in but wanted to know Beth if you are 100% lobular or a mix of ductal and lobular? I am a mix and I know a lot of other women are as well. I am at 5 years and on fulvestrant only. previous I was on letrozole only.

statistics are always lagging behind. I know you mentioned that lobular is listed as 22% for 5 year survival. well ductal is listed as 28%. not much difference. but both inaccurate. we know many women are living way past 5 years with mbc. those statistics are outdated. try not to look at them. XO

[Bettybuckets in reply to kokopelli2017]

thank you so very much! That is just what I needed to hear!

[kokopelli2017 in reply to Bettybuckets]

♥️

[13plus]

I wonder if the pain in your hands and wrists might be only from he Anastrozole? Sometimes those hormone-related drugs can really do a number on just one part of your body! At least you have the good news of the scans showing nothing new, that is something positive My most recent scans showed new small liver lesions so I have to change regimen. I'll be hearing this week if they will let me into a trial I would like to take part in!

[Bettybuckets in reply to 13plus]

Please let us know about getting into the trial. Really hope so! It Must be so hard to find the right one right at the time you need it. ❤️

[13plus in reply to Bettybuckets]

Thank you! I have an appointment next week to sign the consent form, but extra bloodwork and a couple of other tests have to be done prior before they will confirm for sure I can join it. It's a combo of Lynparza, ibrance, and the ever enjoyable Faslodex shots in the behind. I've been on all of them before and tolerated them well but this is a first time trial of combining them. I was actually looking to join a different trial originally, of an existing drug and a brand new drug together. However Phase 1 is continuing longer now so the next Phase won't start early enough for my needs, so this is an interim shot at something else. 🤞

[Timtam56 in reply to 13plus]

Good luck with it all. I’ll be watching out for you here.

[Kerryd22]

I’m on Exemestane and about 1pm each day I break out in a sweat. It’s annoying but people are kind and don’t comment on it although a couple of times I’ve been talking to someone who doesn’t know I have cancer and they invariably suggest we move somewhere cooler or in the shade. It’s men most often who do that - I cannot agree with the claims that are so often made about toxic masculinity as I’ve not really experienced it! As Exemestane is working to keep me stable the embarrassment of having to wipe my face in public is offset by PFS.

I’m on opioids too. I generally take Targin morning and night although currently I’m on Endone but I do have a Tramadol 100mg script which I save for special occasions because it has the effect of making me feel a bit more enthusiastic about getting out of bed. I don’t do mornings but sometimes I have to so then I’ll use the Tramadol rather than the Targin. I ran out of opioids last month and was forced onto Panadol and I found that really hard. If you need the opioids cutting it back will most likely increase your problems not reduce them. I can’t take Tramadol after lunch though or I won’t sleep that night.

I also started using Turkey Tail Mushroom supplement as it’s useful for increasing white blood cell counts. Mine were below 1 and that’s usually the case when I’m feeling extra fatigued. I haven’t had another blood test to confirm if the number is up yet but I am feeling a lot chirpier. Maybe it’s a placebo effect but I don’t care if it makes me feel more lively.

[13plus in reply to Kerryd22]

I would love to hear if the turkey tail seems to help at all when you get your next blood work!

[Kerryd22 in reply to 13plus]

I’ll let you know in January as that’s when my next blood test is due.

[mariootsi]

I pray you feel better! Glad for stable scans.

[Bettybuckets]

hello again chris- I just got my scan back and I am same. I just heard from my MO that my pet scan was stable….but I can hardly believe it as my markers bouncing 400-500..and by afternoon I am so tired that I feel unwell. Standing up makes my legs feel out of oxygen. So I guess that means I can go on my long planned summer vacation back to Nz for all of Feb… in some ways I feel like I was ready to switch drugs to try and feel better but the devil you know is always easier than making myself take a step closer to know more choices.

[Timtam56 in reply to Bettybuckets]

Wait. You mean you WILL go to NZ or you WON’T go?

[stardust1965]

I had night sweats and constant hot flushes when I was on Letrozole and Ibrance and my joints (mainly knees and hands) were so sore. Once those treatments stopped working and I moved on to different treatments all those side effects disappeared. It was a relief! I hope you will have success with the reduction of your pain meds.

[Bettybuckets]

hi Tim Tam- I’m so lucky to have a caring MO in Nz too. So my boston oncologist isn’t opposed to the trip if I stay well. I just got my good scan result this week. So now I should be able go go to nz jan 21-March 6… and have my next scan when I come back. But I do feel with my very high markers ( always over 400) that I am waiting for the other show to drop.

[kokopelli2017 in reply to Bettybuckets]

hi Beth.

good to hear that your scans showed no changes and both of your oncs gave the thumbs up for your trip back to Nz. but I am wondering if you will feel well enough to enjoy your extended visit? 6 weeks is a long time.....especially if you are feeling so fatigued and unwell every afternoon....in addition to your legs feeling so weak and void of oxygen. I realize your oncs gave you the green light, but will you feel well enough to enjoy?

not trying to be negative. just concerned for you. although I suppose you can always come back early if need be....

sending hugs💛🌺

carole XO

[Bettybuckets in reply to kokopelli2017]

hi Carol thank you for addressing the elephant in the room. I am evaluating that calculation every day. Turns out my daughter here with me was diagnosed with flu and I have been coughing for days and maybe gave it to her. Hoping that when we are through this… I want feel so gosh darn tired. Maybe a B12 shot will help?

I live in boston now where it will be very cold… so flying to summer in Nz makes me happy. My sister 2 BFFs and my hubby are all going and so can help me. There is a big 6 day bike trip that we are all signed up for and I know in my heart that is too much for me… but I have til dec6 to cancel… which is the day after I visit with my oncologist.

[kokopelli2017 in reply to Bettybuckets]

hi again Beth. I too live in MA and can certainly understand your desire for warm weather this time of year😉. it gets pretty damn cold here in the winter.....brrrr. it is also good to know that you have a support group (sister, BFF's, husband) with you and not traveling alone. not sure if you meant you have until Dec 6th to cancel the entire trip, or just to cancel the bike trip. either way....you are a big girl and capable of making the right decision for you. I was concerned for you is all. but sounds like you are weighing your options carefully.

wishing you the best.

hope you and your daughter both feel better soon....XOXO

[Tam-56]

Timtam

So glad for your stable scans! This is great news your original meds are still effective!

The meds are rough on our bodies. Most days I feel as if I’m just getting over a very bad flu… not easy. Although, these feelings are not as bad if I’m distracted such as shopping or going for a walk but when I return home, I need a nap!

Hope you continue to do well on your current meds.

Sending hugs🥰

Maura ❤️

[Timtam56 in reply to Tam-56]

Hah! Snap. Yes that’s what we do isn’t it? Keep doing as much as is possible. Until it’s not. Exactly. And thank you. I can’t believe that it’s still the first line after 4.5 years. I’ll take that thank you very much universe!

Chris