New treatment : Hi ladies Well I’m on... - SHARE Metastatic ...

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New treatment

Barbteeth
Barbteeth

Hi ladies

Well I’m on my second month of everolimus (Afinitor) and exemastane (Aromasin)

I’ve been better than I was expecting and been swimming and rode Bugsy today even though I was in pain

Saw my oncologist yesterday and my markers have shot up to over 650... she said this can happen when changing treatments but I’m a bit suspicious as I sometimes think she keeps things from me...have any of you ladies experienced this?

I’m due a CT scan next month but I’m so worried

All the best to yo all

Barb xxx

56 Replies
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Barb

Go with feeling good! I have scans soon too. Fingers crossed for us both

How are you doing? Been thinking of you quite a lot. Not sure how to message privately.

I haven’t been scanned yet but I can eat! So something is better. I have decided to pursue a disability retirement so I am out on a family medical leave waiting for that to be approved. It can take months. It isn’t how I planned on retiring. I planned to go out in June at the end of the school year. But it doesn’t make sense to go back to work if I’m filing for disability. Honestly, though I am so much better than a month ago, I’m still tired. It was tough at the end. Radiation kicked my ass! Thanks for asking 💕

I am so glad to hear that you can eat and that things are so much better, even though you are tired. I always looked to you for inspiration when I was so sick as I knew you had had lung involvement and were doing well. I was sorry to hear about your swallowing issues. It does sound like the chemo has knocked things back. Glad to hear from you.

I will have a scan in March after 3 rounds of Ibrance and Letrazole. I am taking a Danube River cruise in late March. Really looking forward to it.

I have had problems with my voice for the last 5 months. I feel fine but my voice is diminished. If I am trying to increase the volume I get much worse and it can make me short of breath. They put in a referral to an ENT doctor and I have not even got an appointment yet. Time to look into this.

Yes. As much as we don’t want to know we have to deal with things. Let me know how you do and the cruise sounds fantastic. I saw some of the German countryside along the Mosel

And it was beautiful. The little towns were so pretty

Hi Barb!

Happy to hear that you are better than expected and have been spending time with Bugsy. I have had tm spike whenever starting new treatments without evidence of disease. Hope this helps!

Thanks Leeann

That makes me feel a bit better

Barb xx

Hi Barb,

So glad to hear you are feeling better! How are the side effects? I’ve changed meds too (Faslodex) and my markers have gone up as well. I’ve read that changing meds can cause tumor flares, which I’m hoping this is. The funny thing is this is the best I’ve felt since my dx. My oncologist wants to wait another month before having another scan. In the meantime I am enjoying time with my family.

Sending ♥️

xo Jade

Barbteeth
Barbteeth
in reply to Wintervt

Well when I read the leaflet I thought I’d not cope with these drugs... after the first few weeks I felt ok...tired but hoping the iron infusion I’ve just had will perk me up

I’ve noticed a few mouth ulcers but not horrendous...not stopped me eating

I have a chum who is an oral surgeon and he’s told me to use a mouthwash called ‘Mucosamin’ says it’s the best in his opinion so I’m using that

I’m so pleased to hear you’re feeling good..enjoy

Barb xx

mariootsi
mariootsi
in reply to Wintervt

So happy you are well!

Barb this is so wonderful to hear and I'm sure Bugsy loves to spend more time with his mom. I know it is hard not to worry when you see an increase in your tumor markers but my oncologist whom I trust explicitly told me that when patients start new treatments they often can cause a temporary increase in tumour marker levels. She explained that this happens because a new treatment usually causes cancer cells to die quickly and release large amounts of the tumour marker into the bloodstream which is good....kill those suckers. I say embrace and enjoy the feeling good. I have scans in 3 weeks too so I know worrying is hard not to do. Let's cross our fingers that results are good for both of us. Take care.

Sandra

Barbteeth
Barbteeth
in reply to girlsptz

Sandra I hope our scans will be good too...we deserve it!!

What you said about the reason for markers increase makes perfect sense so I’m hoping that’s a good sign

Yes Bugsy was pleased to see me today...whinnied when he saw my car pull up...he had a good sniff round me...cute!

He’s so funny if I have perfume on...lifts his upper lip and pulls faces...hilarious

All the best

Barb xx

mariootsi
mariootsi
in reply to girlsptz

Hope your scan will be good, Sandra!

I recall what someone said on here a while ago...

Worry wont change anything.

So i dont/didnt. Just got my scan results ... the current treatment isnt holding it back. So maybe i should have worried lol !

Seriously Barb, youre such an inspiration to us. Whatever the outcome you'll cope.

Lets hope for the best !

Xx

Barbteeth
Barbteeth
in reply to Andersl

Hi Anders

Oh sorry to hear about your scan...will you have to change meds as well?

You’re still on Ibrance/letrazole right?..I cannot remember who’s on what

Well if you do have to change don’t go into panic mode like I did because I’m (fingers crossed) not feeling too awful on this combo

Barb xx

Andersl
Andersl
in reply to Barbteeth

Hi barb

Im on pertrusamab and tratuzamab.

Theres talk of me going back on chemo but not doxetaxol as i got signs of toxicity on that.

Im also being assessed on monday for radiotherapy to mets in lungs and probably having stereotactic rt for mets under skull.

Lets hope the treatment is all over by the summer so i can enjoy it xx

Barbteeth
Barbteeth
in reply to Andersl

Oh good luck...and yes you want to enjoy the summer

All the best

Barb xx

That stinks Anders. Sending lots of healing thoughts and prayers. Please keep us posted.

mariootsi
mariootsi
in reply to Andersl

So sorry to hear. I'm sure though that your onc has a plan.

Hi Barb,

I'm pleased to hear that you are feeling so well on your new treatment. I can't comment on tumour markers, as I've never discussed them with my oncologist. I don't think she uses them. But it could well be a tumour flare. I remember experiencing that when I first started treatment. It felt like the primary tumour was growing, but I like to think cancer cells were being killed. It soon settled down and I no longer feel any "activity" in my breast.

Have a good weekend and stay safe. Storm Ciara is heading our way.

Sophie ❤

Tumor Markers (TMs) cannot distinguish between live and dead cancer cells. Often when a new therapy begins to work, an unusually high volume of dead cancer cells enter the system. This in turn can cause TMs to spike. You have an upcoming scan scheduled, the fact that you are feeling well is a tipoff! Giving this combination a bit more time and putting your mind to rest would be good strategies!

Barbteeth
Barbteeth
in reply to Bestbird

Thank you Bestbird

I always get good information on here

It’s so easy to let your mind run away with you

I hope the spike in markers is due to what you explained

Barb xx

rubyc1234
rubyc1234
in reply to Barbteeth

Well I have learned a lot from reading these posts. It sure helps me to relax when I hear that we continue to do well even though we require medication changes. I had a resident 2 months ago who got me upset with his wrong information and I realized he was wrong because of what I have read here.

SophSP
SophSP
in reply to rubyc1234

Hi Ruby,

I feel the same way. I know that when it comes to clinical information I can rely on my oncologist for answers. But she does not give me the ins and outs of a lot of things I have questions about. She is sometimes wrong about side effects too. She said that I would be plagued by hot flushes, but I have hardly had any in nearly two years of treatment and I feel very fit and healthy. She has also admitted in the past that she does not have answers to some of my questions. I would rather be told the truth than have her wing it and make something up just to appease me. I have more respect for people who admit they have limitations, than those who lie. So when she says she can't answer some of my questions I go elsewhere for answers.

Sophie

Barbteeth
Barbteeth
in reply to rubyc1234

Ruby that’s appalling...what did he say to upset you?.. if you don’t mind me asking

Barb xx

rubyc1234
rubyc1234
in reply to Barbteeth

My CT scan had shown an enlarged lymph node by my trachea and another new lymph node had appeared on a gasto-hepatic ligament but the scan said that basically things were stable except for that. My oncologist said that after a year and a half on oral chemo she thought it was time for Ibrance and Letrazole. Quote "It is time for a holiday from the oral chemo." I was fine with that.

So on my next visit the resident walked in and the first words out of his mouth were, "So your oncologist has put you on the new meds because your CT scan showed progression." So I asked after the Ibrance and Letrazole what can I try. He said, "Well then we are talking IV chemo and except for a clinical trial that will be all we can do." I was quite appalled as my oncologist had said there were many things I could try.

So when I saw my oncologist the next time at the cancer centre I outright asked whether the 2 lymph nodes meant progression. She said that the lymph nodes could be progression, but that she was watching them. I asked whether IV chemo would be next after Ibrance and she said there were many things I could try and that the list was expanding all of the time. I felt much better after that conversation.

I am starting to wonder what constitutes progression which is concerning. I note that women sometimes have some tumours that are increasing and others that are decreasing in size. At what point do they change drugs,

Barb, you are very welcome! Wishing you excellent and long-lasting results!

Barbteeth
Barbteeth
in reply to Bestbird

Oh thank you...very sweet of you

Barb xx

Since her nom de plume is Bestbird, I think you should have said that's very "tweet" of you! Sorry -- just can't resist this pun. I hope my "punny" sense of humor is ok.

I had a huge spike when I started Ibrance/anastrozole. They were around 13000! My doctor had the same explanation. She was not concerned. They have gone down steadily.

Now I’m having memory issues from the anastrozole. My new dr may switch me to Faslodex instead due to that.

Funny—to type this I had to really force myself to remember the word anastrozole. Yikes.

Barbteeth
Barbteeth
in reply to Pbsoup

Hi there

My memory is terrible....can’t remember recent stuff...could be the drugs or just old age!! I do puzzles every day codeword crossword sudoku and I’m good at those and they keep my brain active and I read all the time...sure it helps

I’ve never heard of markers as high as those you had!!

Mine were over 1000 when diagnosed with mbc...the lowest they got to was 118.... now over 650 so that’s why I was freaking out

Lots of ladies in faslodex find it an easy treatment apart from the administration technique!!!!

All the best

Barb xx

Hi Barbteeth!

So glad that the new treatment is "going down well"! That's the next treatment that I'm queued up for, so I'm happy and eager to hear how you're doing on it.

Re: the tumor markers...Two different docs have told me (also supported by reading studies) that when a new treatment is working, your tumor markers might spike. The cancer is "shedding" as it is killed off, shrieking in horror from the effects of the meds, (visualize THAT! :) ), and the tests don't discern between like dead/dying/shedded cancer cells and active ones. SO, my point is, at this stage in your treatment, you could reasonably choose to view the tumor markers as a good thing? :)

I do think there's good reason to view this positively. I truly hope that it is... :)

Take care, and I'm happy for Bugsy, not just you, that you two got to go out riding together! :)

Be well,

Lynn

LynnFish
LynnFish
in reply to LynnFish

Oops! Should have read first! I see that other more knowledgable/articulate ppl gave you the same info! Sorry! :)

Barbteeth
Barbteeth
in reply to LynnFish

Well it reinforces what they have said so that’s better for me to hear it more than once

Bugsy is sulking today...he’s been clipped and had a bath...ie with a hosepipe and argen shampoo !!! I think he would have preferred to be ridden...my daughter did the same for Monty so they’re both very smart and shiny!!...won’t last though...I’ve treated him to some new grooming brushes as well

Thanks for your lovely reply

Barb xx

Barbteeth
Barbteeth
in reply to LynnFish

Hi Lynn

I really don’t know what I would do without you ladies on here...it’s good to hear what other oncologists have to say as well

My oncologist will only reduce the everolimus dose if I get severe side effects...I’ve had a few ulcers and some diarrhoea but I take so much codeine they probably cancel one another out...so if you do go this route we can compare symptoms

All the best

Barb xx

Barb, I am one of those that tumor markers don't work on. They stay normal even with active cancer. Blessings Hannah

Me too ... my onc referred to it as ‘marker negative disease’, but I hope the fact you feel ok , Barb, that is the best sign . Wishing you a good scan x

Thank you so much

Barb xx

Glad you’re keeping yourself busy , Barb, with your daughter and the beautiful horses ...we’ve had some lovely weather this week ...before the storm arrives tomorrow! ...Just back from the cinema here , been to see ‘ Bombshell’ . x

Hello Barb

I am so glad to hear that you are feeling better and are able to get out and ride.

My oncologist said tumor markers go up and down and not to worry. But of course we all worry just the same. I doubt that your Oncologist is keeping anything from you. Of course you can always get a second opinion. Hang in there I know you will be fine.

Prayers Mimi

Hi Barb

I’m really pleased you are feeling well on your new treatment and swimming & riding Bugsy.

I’m no expert but I’ve also heard that tumour markers can spike at first when on a different treatment.

A very young oncologist who I first saw just after my MBC diagnosis, told me that he felt the most important indicator of how things are going is “feeling well”.

It’s good you have a scan planned next month to check on everything..... Meanwhile keep doing as many lovely things as you can - you so deserve it.

Jo xx

Hi Barb and others!

Thanks for all the banter on TM and flares...Mine went up slightly above normal at 49. The last time they went up 2 years ago it really was something! 😱 Ended up with right mastectomy! But right now I will call it a tumor flare! I stopped using Essiac Tea for 2-3months because my EGFR went 1 point under normal and we have kidney disease in our family so my sister panicked 😱...so I just restarted like 2 weeks ago. So I will tell my mind it’s a tumor flare until told otherwise...got a clear scan in December...so no need to panic...😀

Hmmm I might try some of that tea....I doubt I’ll like it though...can usually only stomach Earl Grey...not a tea fan

What are the benefits?

Barb xx

Look up Renee Caisse. She was out of Canada. She made this tea to fight cancer...I take the pills...the tea ☕️ doesn’t taste bad but it does smell like the dirt and roots it’s made from 😂! But after taking it for 5 months my next scan was clear. I had extensive bone mets...

I’ve been reading about Essian tea and disturbingly it has shown to increase the growth of breast cancer cells....there have been few studies done so I’m not happy taking that

Why do you use it?

Barb xx

Hi Barb! I’ve never seen studies on it doing anything negative. My Onc knows I use it. And it got rid of about 12-14 bone Mets that I had...It’s also listed in the book The Truth About Cancer. I rely on them a lot to do their research. I know the Canadian FDA wanted to debunk her claims as she was giving it away for free and they wanted to market it. The politics of greed is quite fascinating from a psychology point of view when it comes to cancer meds. 😁

So relieved to hear you are tolerating your new treatment well! Sounds like you are doing life.

I think you may need to just wait( which we all know is so difficult) until your next scan.

Wishing the best results for your scan and your treatments.

Love,

Marianne

Barbteeth
Barbteeth
in reply to mariootsi

Thank you Marianne...it’s so difficult trying to keep a straight head

Barb xx

mariootsi
mariootsi
in reply to Barbteeth

I'm sure it is. I know. All this is so crazy!

Hang in there, Barb! I don’t know anything about tumor flares, but after reading all your responses, it sounds like a positive sign! 👍 Enjoy those rides with Bugsy and sunnier days ahead!! Love and prayers to you!

Linda ❤️❤️🙏🏻🙏🏻

Hi Linda

All the best to you too

Barb xx

So glad to hear your New treatment is not giving you bad side affects.. I am praying that yours and everyone else out there waiting on scan results get positive results. Happy you where able to ride Bugsy I know doing things we enjoy pick our spirits up !! I can't wait for spring and summer I'm not a winter person. All the best Debbie🌈

your doctor is probably right. Our markers do go

Up and down. Prayers for you to

Have peace and good results.

I am always happy to hear you can spend time with Bugsy. Bugsy offers you so much comfort.

I would fret too with a spike in my markers. The fact that you've been able to swim and ride Bugsy is what I would concentrate on. You say you've been better than you expected. Run with that feeling rather than the vagaries of markers. Easier said than done I know.

Hang in there Barb, as you know I am on the same treatment and have been on it 4 months. My scan last month said my tumors are stable. My only complaint is the extreme fatigue.

Try not to worry although I do the same thing.

Happy Sunday and give Bugsy a hug from a fellow horse lover🐴

Robin

I have and unfortunately progressed the 3 mo on the A/A combo.

Thinking positive thoughts for you! Hugs

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