Ramade, Thanks. My post was supposed to say finger nail fungus. How the check did my"Kindle" get and change it to to "confidential fungess". I'm going to go edit it.FF
Hi. I started this about 8 weeks ago. During the first month I got really awful mouth ulcers and was told by BCN to stop taking everolimus but continue with exemestane until I saw ONC
when I saw him he wanted me to try again, but this time he prescribed mouthwash and similar products - and told me to use them to prevent instead of to cure.
I am now coming to the end of my second month, I am seeing him tomorrow. This time I have taken the full month. I did get some mouth ulcers but nowhere as near as bad as first lot. ONC did say that my body would learn to tolerate the pills and the ulcers would stop. I do not seem to have any more developing.
my advice would be to make sure that you have treatments for mouth ulcers to hand and use them at the first sign. Also buy an extra soft toothbrush and maybe an over the counter mouthwash and start using straight away.
I've been on this combo since May. I haven't had many problems. It was suggested to me to buy capsules off of Amazon to put the evermolimus in. It causes mouth ulcers. The drs say getting mouth ulcers is stystematic. They say it doesn't come from them touching your mouth. The literature says not to let people handle them bc it can pass through the skin.My feelings is if it can be absorbed through the skin then my mouth and tounge can absorb it and get ulcers. I believe it was size "00", that I ordered. I had ulcers one time but it also was after having a bunch of fever blisters. I think it was a virus.
I have started to get concerns nail fungus and my nails are very thin and soft. They also break very easily. Sweets taste terrible. If I can think of anything else I will post it. FF
Hi I've been told I will be starting on E and E any advice and how successful have everyone found it at keeping things stable. I have mets to colon and stomach lining.
Hello Carolyn and thanks for responding
the letrozole kept me stable for almost 5 years.
they did not mention Ibrance at all. I know nothing about it so I will do some research this evening and maybe mention it tomorrow
Good afternoon ladies I hope you don’t mind me joining in.
I have been told that I am going to start the E & E combination tomorrow.
I was diagnosed in Oct 2012 with primary and about six weeks later they discovered the secondaries so a double whammy.
since then I have been on letrozole - with very few side effects compared to others.
my TMs started to go up about 6 months ago and I had a CT scan which showed some changes - in my peritoneal or bowel area. I was going to start the EE combo last week but as I have been suffering from diarrhoea for a few weeks the Onc I saw wanted to discuss it with my regular Onc before I started, since EE can cause diarrhoea. I suffer from mild diverticulitis and IBS - she wondered if the changes which showed could be those two conditions worsening - I have had them for longer than the cancer but they have always been manageable and not needed medication. On first being diagnosed with secondaries I had shadows in my peritoneal area which I was told were cancer. The next scan said they were almost completely resolved and then the next one said that they were no longer visible...the other worry is that they may be returning.
she thought a CAT scan might be worth doing for clarification. At my appointment tomorrow she said that the EE would probably be prescribed so that hopefully it can start doing the job whilst they sort out the scan.
I am just getting over a cold and a cough and hoping that this won’t delay the EE further
I have read through the whole of this thread and found it very informative - I am becoming aware of the SEs and hoping that they are doable, as the letrozole ones were.
I used to post on the forums quite often, but haven’ t done so for a while, although I have read them frequently.
Srilata, so pleased for you. Now, if you feel well you can maybe have a week away somewhere lovely.
with many hugs
Hi Srilata and ff, love to you both, srilata-ff is right, fight! More treatments are in the pipeline, sorry about lung mets but don't worry, it's detected so they can get on top of it. Ff, crossed fingers for scans. They are waiting to see what my radiation has done before they decide what to put me on next. Awake most of the night because of steroids but I did read a good book instead of sleeping so something positive I suppose.
hugs to all
Thanks Silrata! I was hoping my story would give you some fight!! I really thought the two times I was really sick and on O2 would be the end for me. It was very scary times. I can't promise you it will work that way for you or anybody else, but figure it gives hope. I will let you know how it goes with my scans. I don't know why but I kind of feel the drugs are failing. Was really hoping to get 3 more months. We will see. FF
Srilata, I did lupron injections first to shut down my ovaries. This didn't work and oncologist said no hormonal a would work for me. I did abraxane/avastin for 6 months was stopped bc of SE. Oncologist gave me a 10 month break and things kicked up again. Then vinorelbine (navelbine) for 5 years. When this failed my cancer went wild. Ended up with collapsed lung and 2 weeks of radiation. Lungs swelled from radiation which caused heart to act up and landed in the hospital. Sent home in O2! (Oncologist told me months later he though that was the end for me. That was 5 1/2 years ago. Swelling went down and my lung reinflated and I got off O2! I was then put on capcitibine, worked 2 years. Then gemcitibine for about 9 months and had a toxic reaction to it. Lungs swelled up and I could hardly breathe, ended up on O2 again. Within about 6 weeks I was fine. That's when I stomped my feet, just about through myself on the floor and said I wanted to try ibrance/letrozole. Onc finally said OK but told me it wouldn't work for me. He retired! The combo worked 21 months!! Now have been on this "E & E 6 months. If it quits working I at least got over 2 years on hormonal. Gave me a break from chemo. I thought I would put my story out here again, so you don't panic over your lung mets. Also I wanted you to see that even when I had a problem and ended up on O2 I got off of it! I know we are all different, but it gives you some hope. One more piece of advice.When my lung collapsed years ago and the time I had the toxic reaction, I used An incentive spectrometer religiously!! My oncologist and pulminologist both told me it wouldn't help. That my lung was done and wouldn't reinflated. I read on line that it could work. The respiratory therapist said it could too. I did that thing probably 50 times in a row about 8x a day. Don't give up if you get scared!! Fight! FF
Srilata, I'm sorry. It is so heart wrenching when a treatment fails. When we are sailing along smoothly on a treatment we tend to let our hair down and move along with life. Then along comes the treatment failure and puts us in a panic again. This isn't an easy way to live. Have you had chemo? I did a few chemos and did very well on them. I actually had the worse time when I was on letrozole! Hope you get answers and a n we treatment quickly, so you can get your mind settled down! I have CT in 2 weeks and results 2 days later. Let me know what treatment they decide for you. Hugs! I will be thinking of you! FF
Hi lyndyloo, srilata, ff, yes waiting for scan results is awful. Srilata, still waiting for radiation appointment hope it's not long because my left shoulder and arm are really quite painful. Just to add to srilata's comment, I think it would be very difficult to cope without each other, so a big thanks to all.
love and hugs
Srilata, That's fantastic news!! Glad the onc feels the tumor markers are nothing to worry about! I don't get tumor markers. Hugs!
Lindyloo, That is a long time to wait for scans. Mine are always compared to previous scan. It takes 2 days to get my results. I hope you get yours soon. I would be going crazy if I had to wait that long. Hugs!
Thanks Srilata, and I do hope your meeting goes well and you have good news.what an awful roller coaster we are all on.thinking of you and send big hugs
Thanks ff and lindyloo for your kind replies. Its true I don't know what's left to take now but hope the doc comes up with something. I've never been on tamoxifen either but have had a lot of iv chemo that's for sure.i've been given some low dose lorazepam to take the edge of the acute anxiety, it worked, now I've stopped the weeping and feeling sorry for myself and instead feel a bit spaced out-much better!
hoping you last a long time on this treatment.isn't it weird that we have the same disease but each person reacts differently. Goodness it's a minefield.
have a good weekend,
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
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 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
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
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.
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.