Another wasp hater here!
Hope you are all doing as okay as possible.
I cant remember if I said or not but my QT prolongation has gone back to normal so I am currently on my cycle of being off the trial drug. On Friday I start it again, they haven't reduced the dose which has surprised me as I thought they would have done because of my heart last time. I just have to trust they know what they are doing but it is very hard and worrying.
ive not been into work since my diagnosis in May, they have been excellent with no pressure to go back and just asking me to work from home as and when I can. I've decided to be brave and try and go back tomorrow. It's a very small office with only 5 other people in. I usually start at 8am, but having not been up at that time for a while, I'm going to go gently and start at 10am I think x
my apologies for the long absence. I was actually checking in regularly,but found very few people around for a while and ...became a bit busy elsewhere.
however, I think we all worry when one of us disappears.....makes us wonder if they are ok!
i am ok, but like Carolyn and Ff, find it hard to sleep and like ff I have been needing some space from my oh.
I do hope everyone is chugging along nicely?
MariaLouise, am so glad my words were helpful...life is a bit like that isnt it? I find that every so often someone will put something over in a way that really helps me......and of course on this forum we are lucky in having so many lovely ladies to chat with xxx. I hope things are going well for you now, am sure you will get some benefit from the drug too.
I read some research about twentyfive years ago ( must be) by the 'Simontons' drs in the usa who ran groups for terminal patients and found that many of them lived far beyond expectations.....well we are a kind of 'group'
arent we ladies?. And my guess is, this forum also extends lives.
Wow, great photo Bon. A definite plus side to the nights when we lie awake, I must check the sky myself when I'm lying there trying to get back to sleep. A good place to post it as its very uplifting and, as we know, we have a chat on the Bone Mets thread more than any so there's no reason not to share things like this. I have never joined the secondary private part of the forum partly because I think I'd have too many threads to try and track - it's busy enough at times on this part of the forum!
Hope everyone is enjoying the sun this Bank Holday weekend, all the others have been a wash out if I remember correctly. OH and I had a great day at Carfest South on Friday, great weather which helped a lot, a good start to the weekend - now onto clearing out our bedroom and bathroom waiting for the builders to arrive on Tuesday - not so much fun.
There are few upsides to not sleeping well but sometimes you see beautiful things. The other day I looked out at 5 am to see Venus close by a slender crescent moon. Dawn was breaking, bats were still flying and crows were having their first morning squabble. This morning I looked out at 4 am and saw Orion low in the eastern sky - a sign that autmn is almost here. It didn't look quite like like this picture.
Slept really well the night before last, can't remember when I last did. Felt so different yesterday.
This has nothng to do with bone mets. We used to post things that had inspired and moved us in the secondary private group but hardly anyone goes there now so please excuse me for postng here.
Hugs to all Bon xx
Good morning all,
I am amazed at all the breast cancer knowledge I have gained from this forum.
Thank you all who take the time to get this information and post it for us to read.
I can't believe there are so many treatments oncologist use to help us live longer.
I was diagnosed with secondry bone in March this year and was devastated but over the months this forum has helped me cope and I am more relaxed about the situation. Thanks ladies.
Take care out there and I hope the sun shines for you this bank hoilday.
Thanks Nicky, that does explain why they had to wait quite a while to get these results through. I am afraid I am a head in the sand kind of girl when it comes to my oncologist appointments and I just get the urge to bolt !! I must be more pro active and knowledge is power but I am a complete disaster as soon as I get in the hospital. So a big thank you to you lovely ladies .
The sun is out here this morning so I hope everyone has a lovely long weekend, out and about, in the garden or just winding down.
much love xx
Well, I think between us all we managed to explain things 😊
The other thing I've learnt about the HER2 tests is that they do an initial test using dye which locks into the HER receptors on the surface of the BC cells. Depending how much dye is taken up will give an initial result between 0-3. If you get a 3 you're definitely HER2+ and if you get a 0 you're definitely HER2-, however a 1 or a 2 do mean it's inconclusive so they go on to do another test at DNA level which is the one that takes the time as I don't think all laboratories do this test. That result will give you a score (I don't actually know what the range is). Anything over 2.0 is deemed HER2 + I am only slightly over this figure (and it used to be that 2.2 was the cut off point) which is why the oncologists have determined I won't gain anything further from Herceptin treatments as I didn't respond well to the last one. I've only learnt this recently, about the score results but you can search online for these explanations. I remain hormone positive which is why these type of treatments have benefitted me the most over the years - well, and chemo of course!
Thank you so much ladies I have a much better understanding of it now. I think my her status was the test that took quite a while to come back as it was inconclusive, eventually I was told + but I suppose only just if it took a while to decide. I will chat to onc at my Oct appt.
Red riding hood I do hope if you have a treatment change you can still get out in the garden, you can disappear into a different world sorting out flowers etc.
take care everyone, much love xx
Maria-Louise.........Like you I have been hoping that everyone is out there having a good summer! It has been a bit quiet lately. The weather hasn't been too good, but if things are booked then people go ahead, especially if it means going abroad. So things should pick up here at the end of Sept.
You asked about herceptin so I am putting my oar in. I am probably having a treatment change myself soon, but will have an MRI to make sure in a few weeks. I have been on letrozole + denosumab since 2ry dx 2 and a half years ago. All stable until now when a small change in the liver was spotted. I may now move to herceptin from letrozole......which has been easy for me.
Criteria for herceptin? You won't benefit unless you are HER2+ve and most 2dary people have a HER2 test at the start. Sometimes at crucial moments they will test for HER2 again, just in case. I had one HER2+ve result out of 2 biopsies at the start so herceptin was a possibility then, but I was stable on letrozole.....ER+ve 8/8 too......and lung spots vanished, so I stayed on that. Because of my possible progression HER2 becomes relevant again. So that is the first thing. Then the manufacturers......Genentech in US......trialled the new anti HER2 drug perjeta alongside herceptin and found a small but significant improvement when those 2 are given alongside chemo......docetaxel......for 6-8 rounds. Then the herceptin/perjeta continues for as long as it works. The trial was called CLEOPATRA.....acronym.
So....criteria involved are 1. being HER2+ve 2. herceptin is now taken with perjeta (pertuzamab) 3. docetaxel must be taken to start the herceptin/perjeta......unless the person has already had docetaxel in the past. In that case you can start without chemo.
It gets more vague in that the consultant has discretion with the chemo........if it is too hard then it can be reduced in concentration or in number of rounds. It just has to be tried. My onc has told me that. I am a bit worried at my age (70) and size (very small!) so he said it could be a lower dose, and/or fewer rounds. NICE has had to agree to the CLEOPATRA results of course.
I hope that is helpful. I am not an expert of course, and it is always worth looking further, or asking your onc. Everyone has different situations and needs. But most of what I have said is fairly accurate! It gives you an idea. Hope it helps and it is what you were asking about.
Out into the garden. If I start on docetaxel in Oct I won't feel like gardening so am trying to cut back a bit now! Take care everyone visiting the thread today!! Love to all,
Hi Marie Louise
Glad to hear you are feeling more positive, having progression (however slight) and a change of treatment always throws us I find. Once you get settled on the new hormonal you can hopefully have a breather. I agree that the hormonals can make you very achey though and feel like you are 97! I will be back on some form of hormonal in the next few months once I finish my course of Eribulin.
In answer to your question you only benefit from having Herceptin if you are HER2 +. I have had my HER2 status checked twice since developing liver mets and was told that my status had changed from negative to positive. However I have recently been told that I am only weakly HER2+ therefore won't benefit from having any more treament that is based on Herceptin. What I do know is that all BC cells have HER2 receptors but it's only when tested you find out whether you have an over expression of them. If you do have more than is usual you are likely to be given Herceptin. All BC tumours are tested for this, you don't need to ask to have it done but you can get a biopsy done (if appropriate) if you ever want it checked again - as I did after 5 years of mets. The majority of women's receptor status, including hormone status, won't change but it can do in about 15-30% of cases from what I've read. Hope this helps.
It has been rather quiet on here this week and I really hope its because everyone is feeling ok and out there enjoying the last weeks of the summer holidays.
Funnyface what a lovely way to spend a few hours just you on the lake with a Kayak, hopefully you will do it again.
I had a bit of a meltdown last weekend after being told of change of treatment but I am now back on the treadmill ! There is no reason why this little pill won't do its job for a while is there !
Just one thing I have noticed as I have been through the threads is Herceptin keeps popping up. What is the criteria to be able to have this as part of the treatment plan ?
Nicky I hope you enjoy your day out and the bone ache give you a break for the day. Since starting new hormonal pill It feels like I can feel every single bone and joint in my body. Not sure if I went to bed 47 and woke up 97 !! Oh the joys ....
Loving your description of your kayaking adventure FF. Drifting off away from the shore as soon as you can so hubby can't be your watersports coach ha ha. I hope you get to do it again soon as it sounds like it suits you to have that much peace and solitude, bliss. Plus a sense of achievement that you got on and did something like this, I'm not good on water so I don't think it would be the right thing for me.
It's all very quiet on here in general, which is a good and bad thing! I expect ladies are off doing a few things as tends to happen in the summer months, not that we've had much of a summer in the UK. A hot blast in June then very iffy weather otherwise. OH and I are off to Carfest on Friday - no, not camping, just a day ticket as its quite close to us. We went last year and it was a good mix of cars (obz), food, music and a funfair. Beautiful weather last year but not so good this year, at least the sun seems to be out for most of the day though which will make it easier as it was pretty hot last year until the sun went down, then very chilly. I just have to hope I can cope with the walking around and no real seats to sit down on as I'm always a bit achey after having my Eribulin. If I can't we can always head home early as I'm designated driver.
Enjoy the Bank Holiday weekend ladies, whatever you are doing I hope you get to do something nice.
Carolyn, I loved pottery when I was in high school! If you can find two men like Patrick Swaze to mold us, I'm in!
Yes Rosie it was bliss! I desperately needed alone time where nobody could tell me how to do it. Love my hubby but driving me crazy! I couldn't find my water shoes so found an old pair of hot pink Mary Jane crocs. They have two straps on them. One goes over the top of the foot one goes behind the heel. I put them on and hubby looks over and says don't you think that strap you have over your foot should go behind your heel. This is me, Nope and I think I know how to put my shoes on all by myself!! It was supposed to be just me and my son going. Next thing I know hubby pulls into the lake and sits on his lawn chair. I'm now livid bc I don't want him screaming directions from the side line. Him and my son both said you are going to stay near the edges in case we have to rescue you. I'm like sure! Lol in 5 minutes I was out in the middle of the lake where I couldn't hear them!! There was kids like 6 and 7 kayaking and on those stand up boards. I figured if they could be out there so could this old woman. FF
Some fun info. Last week I decided I wanted to try kayaking on a big lake by our house. Sunday was the maiden voyage. Myy son took me! I impressed every one and myself! I was all over the lake and didn't flip over. I enjoyed being part of all the activity happening on the lake. I also enjoyed being out there relaxed by myself!! I felt normal, not a cancer patient! I will be going again! Not bad for a soon to be 63 year-old decrepit woman!! FF
Rosie, Hope your itching stops! It's so annoying! I have welts and bumps on my cheek today. My meds can cause acne. Yesterday it was one bump on cheek and chin. Today it's about 5 bumps. It is red in a circle about 2 inch in diameter. Doesn't itch! Just looks lovely to go to work with!!
Carolyn, I truly can't figure sleep out! I've been trying to go to bed and rise and shine at around the same times. I don't get an afternoon nap anymore since I work 1 to 4! Yesterday when I got home from work I could barely hold my head up. Hubby made dinner and I sat. I was like that all evening but wouldn't allow myself to sleep. About 45mins before bed I said OK you can lay down, relax and watch some TV, but if you start to fall asleep you have to get up. I did good and felt relaxed. Thought OK maybe this is whst I need! I need to unwind better b4 I get in bed. It was a no go! Went yo bed, Hi ceiling! You and I are staring at each other again. Wow, fantastic lightening display. Guess I will turn the radio back on! Look at that concern, I hope the spider hangings that made it. Maybe, I should get up and knock that down, b4 he gets me etc., etc., etc.!!!!! What happened to being tired!! Now, I'm up but ready for bed! I'm like a baby with my nights and days confused. I'm trying hard to readjust this old clock!! FF
I have Zometa every 4 weeks as I also have a bone met in my pelvis. Is there a reason for having Exemestane on its own if it is usually given in combo ?
Funny face, Carolyn and Bon I cannot thank you enough for your support today and Mojan I am going to repeat your words every morning, I won't believe it won't work I will believe it will !!
Since being diagnosed and having treatment this is the first time I have heard the words progression so it's knocked me down. I feel so well too that I wasn't expecting it.
Anyway you all know what I mean and you are all amazing xx
Hi Maria Louise
I have bone mets and I take exemestane and denosumab which is a bone strengthener administered by injection every 4 weeks. I've only come across one other person who is on exemestane on its own for sbc. You may experience different side effects from the ones I have, everyone is different though the se/s seem to line up with what the leaflet in the box says. In addition, it's hard to tell which drug is responsible for what you feel though I have tried to keep a record. I have numbness, tingling and shootong pains in my lower legs and feet. My feet hurt if i walk too far and when i get up from sitting or lying but this does vary during the course of a month. I get other odd aches and pains in my pelvis and hips. To begin with I had numbness and tinglng in my hands but this seems to have gone. I have had periods of feeling dizzy and I don't sleep very well which I think is the main cause of feeling tired. It's definitely a step up from tamoxifen. Having said all this it's not that bad. I have off days but lead a fairly active life.
I hope it works for you and doesn't cause too many problems.
just read your post ,my goodness hope i dont have two black streaks or will look like a zebra,which will be more hilarious to family ,
Renee, My hair came back in after my primary cancer slightly curly, my normal mousy dirty blonde with two white streaks about an inch wide. One down each side of the head! Out came the box of bleach! Then I lost my hair with secondary and it was a drab mixture of different shades of blonde, brown, white, and grey. My husband has never complained about anything I've done to my hair. Always said it was my hair. One day he looked at me and said I don't want to hurt your feelings, but your hair color is a mess!! He said have you thought about coloring it again or are you waiting for it to change?!? Out came the hair products again. FF
i am going to ring oncologist secretary when i get back on monday as he stated at last appointment he was bringing my next appointment forward by one month for his and my own peace of mind ,plus bringing the ct scan forward to correspond ,so why now cancel??
i noticed in one of your posts you were on about hair,well i am 76 and never ever died my hair ,always been a mousy colour until ,darren was born in 1969 and i went silver grey and always have kept it silver ,but i did lose some hair before i came of the chemo and still lost quite a bit on targeted therapy,however it is growing back in JET BLACK ,plus all curly in nape of neck,i dont like it but have to put up with it ,my family think it is hilarious and keep telling me silver grey with black streaks wwill be so with it ???they are on another planet
Renee, I'm relieved to see your DIL is able to give you a lift to these appts. You amaze me with your strength to carry on! I agree 18 days will be a long wait! You will need some chocolates to get through! FF
Jellytot, I'm sorry you had a problem again. I'm sitting here praying and wishing for you to get squared away with a treatment plan that is effective with minimal SE's! You need a break emotionally and physically from this rollercoaster. Hugs, FF
PMOL, I'm happy you found the escape door! Enjoy your sister! I hope you can have some fun! FF
Maria Louise, Ignore my previous post.I was catching up on posts from yesterday and responded. Then I read today's post. Now, that you have picked up your med I will tell you I'm not having any problems with it. Of course each of us is different. I was on metronome for 21 months and it killed my knees! At one point I was on crutches get some relief from it. This med is not harsh on my knees and has been such a relief. My hair has always broke a lot on all the drugs. I was just looking at my hair today and it seems like the broken areas are growing. I'm a bad one. I have never stopped bleaching my hair. I'm not advising anyone to bleach their's, I just hate how mine looks without it! Good luck!
Maria Louise, I don't blame you for being upset. They should not have changed yiur drug without an explanation!! Maybe others might disagree with me but I think that was unprofessional! I'm furious for you! Have you received the drug yet. I'm thinking it might be exemetsane which is also called aromosin. I am currently on exemetsane but in combo with evermolimus. Did you make any complaints about SE's of tamoxifen that he might have thought a new drug might be better? I hope you can get answers on Monday! I'm sorry you have to wait the weekend! FF
I think I must be post menopausal as the fec chemo stopped my periods over a year ago and I have not had one since. My scan was 2 1/2 weeks ago. My tumour markers were OK as I have them done every 4 weeks before I have zometa. Maybe they are not an accurate indicator on some people.
I am am just hoping that these new pills do their stuff and stop any further spread. I had to look up where my adrenal glands were !! Now I need to re group and be positive again, I.believe in the pills. Out of interest do you follow any particular healthy eating plan that helps with these little blighters.
Carolyn thank you for your explanation and I hope you those tablets keep you chemo free for many years to come. You and Jeanette seem to be doing so well on them. Xx
Oh, our posts have crossed.....now we know....i Havent personal experience of it, but dont google....you can ask the nurses or call the helpline for a chat. Just stay on this site. and dont worry, it wont make any difference...just take the drug, try not to imagine awful things...and chat to the bcn on Monday.
bon is obviously the ideal one to help you with getting used to this. The aromatase inhibitors work in a very different way to tamoxifen. They are brilliant drugs and they usually work...tho the length of time might vary from one person to another. You havent said wether you are post menopausal or not or if you had a recent scan but it coul d just be that the doctor just decided you would be a better candidate for exermestane.
at any rate - you could call the brrast care nurse on monday and have a chat....ideally you wold see the doctor...i have never had a change of drug like that without a chat first.......its a new one on me...but maybe if you either live a long way away or arent very mobile, he thought this was the ideal thing to get you started.
dont assume it wont work...assume it will !love and best wishes, Moijanx