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Re: exemestane and everolimus

Ramade, I'm very sorry to hear this. We wear our hearts on our sleeves when these  drugs fail. We count on each and every drug working on us to give us more life. We keep on truckin through life hoping and preserving, then when something fails we go running and want to hide with our tails between our legs. I don't remember what treatments you have had. Have you had a lot of chemos? I had quite a few chemists and this is my second hormonal. If this fails it's back to chemo. I've never had tamoxifen and she said it won't work for me since both hormonal were given with something else. She said a single agent win t work now. I will go back to chemo, but when I get down to no choices I will fight for tamoxifen.If you haven't had chemo please don't be afraid of it. I had more side effects from these hormonal than I did chemo. Each of us is different, but I had a long run out of navelbine (vinorelbine). My oncologist said he had many ladies do well on it. Few side effects and long runs. I got 5 years with it. Maybe, you could give it a try! I hope radiation is easy for you. Big hugs!! FF

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Registered: ‎30-03-2017

Re: exemestane and everolimus

Hi there  ff srilata. I have had some very bad news that the e/e combination that I have been taking has not been working and the cancer in bones has spread, I now have to have radiation to top of spine as it is pressing on nervesand sending pain across my shoulders and down my arms. I'm feeling sick with worry because I knew it would perhaps only work for a limited period

Not to work at all is devastating and I don't understand why- I couldn't ask I was trying to keep back the tears while I was in there. I don't know yet what they're going to give me next. What if nothing works? Sorry I'm in a real state.

ramade x

Community Champion
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Re: exemestane and everolimus

No picture! Amish don't allow pictures!

Member
Posts: 83
Registered: ‎10-03-2017

Re: exemestane and everolimus

Hi FF ,Ramade,
Happy to know that you feel better. FF that"s a huge catfish. Do you have a picture?
Actually my immunity system totally failed. So i have to stop everolimus and start on antibiotics
Lets hope this works. I have high fever and chest infection.
Love to all
Community Champion
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Registered: ‎01-05-2012

Re: exemestane and everolimus

[ Edited ]

Ramade and Silrata, I'm still itchy but onc doesn't feel I need a dose reduction. I don't have a rash, but I have a lot of dry skin. I think this makes me itch. I'm still having post nasal drip and a lot of having to clear out my throat! Annoying but doable! My scan said stable with a few nodules shrinking. I thought the drugs weren't working. Post nasal drip is usually what starts happening to me  when a drug is failing. I guess this time it must be something seasonal causing it! I'm having a rough time going to sleep. I don't know why.  I walk around here in the evening, barely staying awake. I hit the bed and my mind won't stop! I lay awake for hours. When I do sleep I'm lucky if I sleep 3 or 4 hours. When it's time to get up I'm ready to sleep! I think it started with the stress at my old job, then the scans, and new job. I'm hoping this ends soon since I have my scan results and love the new job. Lol, now my mind has been on all the activity ideas that I want to create. 

 

Hope you both are doing OK and maybe even having some fun! Our budget is tight so no big vacations. We have been keeping busy with a lot of  small activities. We both have Thursdays off and enjoy going out and about on it because it isn't as busy as a weekend.  This week we went to a place called the Conowingo Dam. It was built to generate  power. They have picnic tables and people fish there. It us a great place to view Bald Eagles and osprey. We packed a picnic lunch, binoculars and our cribbage board. We saw 5 eagles and several osprey with fish in their talons. An Amish family was fishing and the father caught a 40lb catfish!  I won all 3 cribbage games!  Have to pick a place for this Thursday. Have a good week! FF

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Registered: ‎30-03-2017

Re: exemestane and everolimus

Ff, hi, well done on your new job. How did your scans go and how are you feeling generally.

srilata, good news for you, I am pleased. I am ok, chugging along, having a clearout.

love and hugs 

Ramade

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Re: exemestane and everolimus

Thanks Srilata!!

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Re: exemestane and everolimus

Hi
Sorry I couldn't reply to your posts bc my mobile broke. The battery melted due to overcharging. Thanks for your support and the information was really useful. I had a check up today with my onc. He said there is nothing to worry now. But no iron supplement as I am taking calcium
FF Congratulations on your new job
Love and hugs
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Re: exemestane and everolimus

Ff, that sounds like good news. Good luck with your scan and results at beginning of August, I will be thinking of you. Sending good luck vibes to you and hugs.

ramade

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Re: exemestane and everolimus

Dear Srilata, sorry I have not replied before but the dog had chewed through both my battery chargers and I had to order more. So sorry you are having problems, I'm sure there is something they can do, this must make you tired I should think. You have done so well so far, having been on full dose for such a long time. If they can't fix it they might bring down the dose.I am on 5 mg now which haven't given me any side effects so far. Having a bone scan on Thursday, it seems it's quite difficult with bones to see how well it's working because the damage done to bones takes  long time to repair even on working medicine, so they look for spread.

let me know what they decide to do, you are so brave.

ramade

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Re: exemestane and everolimus

[ Edited ]

Srilata, I don't know much about blood levels and problems. I don't know if it's safe to take iron, but would Google it. I do know you could also increase your red meat consumption to raise the hemoglobin levels. I do know low hemoglobin can make you short of breath bc you need hemoglbin to carry O2. Sorry, I'm not much help! FF

Community Champion
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Registered: ‎26-10-2015

Re: exemestane and everolimus

Hello srilata
To be honest I dithered about whether to post that info but if it helps you and others reading ..then maybe it was OK.
The more info sometimes the better ...
Hugs xx
Member
Posts: 83
Registered: ‎10-03-2017

Re: exemestane and everolimus

Dear Carolyn and Linda,
Thanks. Carolyn this really helps bc it is clear everolimus is the csuse. I also had nose bleeding but that stopped by itself. I think I have to see my onc before it becomes too serious.

Community Champion
Posts: 8,517
Registered: ‎26-10-2015

Re: exemestane and everolimus

First of all ladies ..I'm not on this regime but in daily contact with my friend in Australia who was on it.
She suffered nose bleeds, really really dodgy tummy, rash and her haemoglobin dropped really low and had to have blood transfusion ..so it didn't suit her ..she is now on letrozole / Xeloda and hoping for a better quality of life.
Hope this helps .
Member
Posts: 505
Registered: ‎01-05-2012

Re: exemestane and everolimus

Hi Srilata

Sorry I am not able to help you regarding this as far as I am aware I have not had a low count. You could check on google whether it is ok to take iron tablets whilst on Everolimus or check with your oncologist. Hope u get sorted. Hugs Linda
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Posts: 83
Registered: ‎10-03-2017

Re: exemestane and everolimus

Ramade,FF,Linda,
Can you help with this. Everytime i have my blood test I find my haemoglobin count going down. Is this bc of Everolimus? Is this a side effect ? Is it ok to have iron supplement. My GP has prescribed iron capsules . Love and hugs
Community Champion
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Re: exemestane and everolimus

Ramade, Scan is Aug 1st results the 3rd. Well, I don't feel so weird now on the sneeze. Luckily the radiation took mine away. I hope it never comes back!! FF

Member
Posts: 232
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Re: exemestane and everolimus

Ff, I've met someone else who also sneezes when things are on the move. There must be a connection. When is your scan following e/e?

Member
Posts: 232
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Re: exemestane and everolimus

Well my sneezy friend, it's mystery!

Community Champion
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Re: exemestane and everolimus

[ Edited ]

Ramade, When I first started this I journey of lung mets besides the post nasal drip I had a weird sneeze. I would get a tickle in my throat and it would trigger a sneeze. The sneeze didn't come out my nose it came out my mouth. I did Google it years ago and you can sneeze like that. This sneeze would happen sometimes like 100 times a day! I seriously am not exaggetating. It was awful. Between the sneezing, coughing and post nasal drip, I would end up at the trash can. When I would have a bad episode I would have a difficult time catching my breath. I would lose control of my bladder too! When I would eat I would get more post nasal drip! This was all a vicious cycle. It would happen at friends ,in a restaurant, etc. Quite embarrassing! I git that I didn't want to leave the house. I had to carry a diaper bag with change of clothes and even shoes! This went on for 7 years!! Then when the tumor was closing off my bronchus I had radiation. When I was finished radiation it was gone! I kept waiting for it to return. Weeks went by and it was still gone! I was still afraid to think it was gone, bc when I got a cold the sneeze woukd go away and I would be hopeful it was gone. Then a couple days after the cold I might get 3 or 4 sneezes, each day for about a week the sneezes would increase  until back to my pattern. I just didn't want to be hopeful and have a broken heart. A couple months went by and nothing. Well now 5 years have gone by!! I talked to my oncologist when all thus was going on. He said he didn't know what could have happened, but he was positive that the sneeze and p ist nasal drip weren't cancer related. The radiologist says she doesn't know what could have happened, but she does feel that it's obvious that something did. My new oncologist agrees with me that it was from the cancer, but has no explantion either. She wasn't my oncologist til after all this. I would love to have an explantion out of curiosity, but will just be happy it's gone!! I hope it never comes back. FF