FF, brilliant news.
I do try to follow this tghread regularly but its sometimes so bsy i lose track so apologies to anyone i could have responded to and havent. Best wishes to all, especially those witing for scans/results. x
Thanks ladies! It was very hard to post about being happy, when we are all so upset over Marirose! I decided she would want me to be happy and post. We carry their torches with us!
Nicky, I don't know about you but I hate having to adjust and find the new normal! Why can't we just be normal! Whatever normal is!
I already posted it elsewhere, but I also had immunotherapy at Hallwang, now more than two years ago. I had breast cancer and i am Male. That is very rare but just as bad. I have been in complete renission for 2 years now, so I can only speak highly about their treatments, they are indivual and unique for every patient.They performed a tumor-associated antigen test and Next Generation Sequencing on my tumor tissue in order to find the best targeted treatment for me, as these tests show genetic modifications or expression of certain surface markers found on cells. So, in your case a totally different expression pattern could show up, which means there is a different medication or vaccine for you. That is what I like about their approach-it is not one drug for all, but really individual-based.
I also Love that they Know what they do and keep up with research. The doctors there have a profound research background and knows their stuff. I have been to clinics that offer you some Kind of vaccine or so-called immunotherapy without understanding the rationale behind it. I also recommend getting Information from Hallwang Facebook site, they are actually the only clinic i Know that posts real scientific data from ongoing trials and not some opinions or weird data of unkown origin.
So I can only recommend the clinic to you!
Hello Nicky, sorry to hear you are so tired on Kadcyla - I hope you can "get used to it" like you did on Cape. I know nothing to do with chemo is easy, but, as long as we don't have severe se's, we all tend to accept the little things as the new normal - I hope it gets to that stage for you but is still effective.
Good luck to all who are having tests, results, se's, and just generally struggling with things.
Hugs to all. Barton.x
Just wanted to say "so happy for you FF!" Free treatment for a year must be such a relief, long may it continue to be effective for you.
Nicky, I'm thinking about you and everyone having new scans and treatments, wishing you strength and positivity.
Carolyn, it's so hard when a good friend on here passes away, it makes me feel sad and I'm not a regular poster like you. I'm in awe of all the community champions giving so much of their emotional strength to supporting people on the forum, it can't be easy and you do a fantastic job xxx
Hey FF, that's brilliant news. I've been following your tale about all the forms and how much strain financially and mentally this is for you - but not having the energy to reply! What a relief especially as it's been so effective for you - long may it continue.
Thanks Janette, Helen and FF for your kind words. I must admit it has surprised me how cr*p I feel! I chat to another lady on the chemo ward who has been having this for well over a year so had expected to feel just like she does - a bit tired for a day or two then up we get again! I'm hoping it might be a bit like starting on Capecitabine all those years ago when I felt rotten the first few cycles and then tolerated it very well- other than the usual hand/feet soreness. I live in hope!
ps Good luck with the MRI Helen, all very confusing - I know what you mean. I'm having another liver biopsy done next week to see if the little critters have changed sides again! Not looking forward to it but it will give a more up to date picture of what's going on - the last one being in 2013. See you later this month x
Hi Girls, A bit of good news! I was approved by the manufacturer of penicillin (ibrance) to get my drug free for one year! They said first they will give my name to a company to see if they can find a grant for my copay. If that isn't found then Pfizer will assist me! They said either way I will pay nothing and its good til the end of the year! I don't know what would happen if some how it is still working at the end of the year r! Will deal with that next year if I need to! FF
What an awful shock to hear about Marirose. Like many of us I had no idea she was so ill. My thoughts are with her family and friends at this sad time. Thank you Carolyn for letting us know.
I have been a bit more absent of late as I struggle with the after effects of my Kadcyla treatment. Having naively imagined it not to be as debilitating as many chemo's I have been absolutely washed out by it this time around, sleeping for about two days! Very unlike me who can't even fall asleep in a chair! Hopefully things will improve as they did for the last cycle and I can be more active on here.
Also shocked and saddened to read the post about Marirose....she was one of those amazing ladies that gave so much advice and support whilst making very light of her own health. Fly high dear Marirose, you will be sadly missed. Condolences to her family and friends xx
Wow, I didn't know Marirose was that I'll! Quite shocked! She was a kind lady always helping everyone. RIP...Hugs and love FF
I am so sad to read the sad news of Marirose. She was so kind to me and often PM when she knew I wasn't well. This kind , caring , funny lady will be very much missed . Oh Marirose , we never met , but I feel we jad become good friends. My thoughts are with her family . M xxxxxx
On no!! I didn't realise Marirose had become so ill. She was a lovely, warm, caring woman and will be greatly missed. I'm very sad to hear of her passing
Well, a real shock.
Marirose was such a support to everyone, across the threads. In tears of course. But she has her well deserved wings now. I'll miss you, Marirose. Fly high.
Hello Lesley, so glad you have the all-clear! It's great reading news like that! And don't worry, cry if you need to - I can understand how the relief can be overwhelming!
This site is what keeps many of us going - we all appreciate all the support and uplifting stories, and even the shared tears.
I do hope you never need this section of the Forum again, but if you do, know that we are here for you (and anyone else).
I too have very difficult veins, even before cancer I was thrown out of blood donors for being too slow! When recently admitted to hospital they ended up doing a femoral stab to get blood out of me, that was after they had used my arm as a pincushion. The technician who attempted to put a canula in my hand for the CT scan recomended not eating any carbs for two days before and then on the day eating lots of carbs to plump up the veins. I had never heard this before and haven't yet tried it but it may be worth having a go.
Just a quick one to hopefully continue to give you hope and positivity.
I was dx with bone mets nearly 11 years after primary. They are quite extensive : ribs, spine, sacrum ....My Onc gave me a zap of radiotherapy because one tumour was very close to spinal canal and also a zap for pain. Then I went on to Letrozole (Femera). I did question my Onc and ask for second opinion as I felt it wasn't aggressive enough treatment. They confirmed my Oncs choice was good for me and I have been on bonejuice and letrozole and am stable with no significant spread over six years on. So you can see hormones can be very effective. We have several members who have lived for many years with bone mets. Dawn is one of our lovely ladies and has been living with SBC for around 14 years.
There is a term for those with just one met but can't remember it at the mo. However, it does appear that often if you have only one or two mets it often stays that way.
Hi Carolyn - thankyou for your reply - you are so helpful. May I ask (if it's not prying too much) - what bone mets do you have and have they progressed since your diagnosis in 2015 or are they still the same. Mine is a small lesion on my spine. It showed up as suspicious, but not definite on a PET/CT scan. I was then sent for a bone scan, but even that didn't confirm it as a bone met 100%. My onc said the only way to definitely know what it is, would be to do a biopsy, which he felt would be too invasive. He says he is 95% sure that it is a bone met, so is treating it as such.
Not sure if this fits in here, but was hoping somebody would have some knowledge about this. When I saw my oncologist last week - I asked how I was going to be monitored and would they be measuring tumour markers - he said he didn't do them and said tumour markers often gave false readings and were not really appropriate for breast cancer and that he would be measuring my progress through scans - has anybody got any knowledge views on this?
I was diagnosed with bone mets just 8 weeks after my primary diagnosis - that was in 2012.
I also had shadows in my peritoneal area which the onc said was probably cancer.
I was put on letrozole which is a hormone treatment.
Like you I was anxious and asked why I couldn't have chemo which I thought would be more aggressive and could put me into remission- the Onc said that he would save chemo for -"sometime down the line should it prove necessary"-
Since then my bone mets are hardly noticeable and the shadows in my peritoneal area are -"no longer visible"-
So in effect there is no evidence of the disease....I have had neither chemo or radiotherapy.
Letrozole and anastrozole are very similar treatments.
Hi Lyndsay, latest research shows that small mets can be cured, it's when it's more extensive that more problems can arise.
Best wishes xx
Thankyou Jeanette and Carolyn for your kind words of support. I am finding it difficult to come to terms with my new diagnosis. When I was originally diagnosed all those years ago (aged 39) - I felt I would never feel 'normal' again and had an inner rage within me (I actually broke all the crockery in my kitchen cupboard!) - but I did manage to return to a happy life. Those negative feelings that I had all those years ago have returned and I don't know how to cope with them - does it get easier with time? On the subject of bone mets - is there always progression to mets in multiple sites of the body and then into the organs or has anybody had a small bone lesion stopped and controlled with no further spread.
Hi, I have recently found out that my breast cancer has spread - I found a lump under my arm - it was biopsed and tested positive, then a scan found a small lesion on my spine. I have been prescribed anastrozole and a calcium tablet plus monthly injections of Denosumab. I have heard that Denosumab can have horrific side effects - can anybody put my mind at rest. My Primary cancer was diagnosed 21 years ago and I have had no problems up until now - so as you can imagine this has come as a terrific shock to me. Is the treatment that I have been prescribed the best on offer - I would have liked to have been given a more agressive treatment such as chemo and radiotherapy to give me a better chance of going into remission. My oncologist told me that anastrozole can cure bone mets - I thought only radiotherapy or chemotherapy could do this. I am thinking about going for a second opinion - has anyone else sought one and how do you go about it.
Hi Carolyn,Thankyou so so much for your reply what a wonderful lady your are, I actually feel like I know you because I remember when I was reading posts a about the cold cap reading your reviews about how it takes 3months to grow a fringe!! Lol ..i did do the coldcap and just kept a short covering of hair but it's something but I have to wear a wig at the moment I don't think iv had any new growth yet but to be honest iv been so stressed out I'm not surprised! I will keep in touch with this thread now carolyn but maybe I need to just relax a bit now and try to get back to some normality, I think I found it so hard as well because I thought that once all my treatment was finished I could looks forward to getting back to some kind of normality I.e hair growing back to work etc but it didn't happen with all this going on! and all xmas and new year it was all I could think about and I hadn't said a word to anyone about it except my oh.
i will keep in touch and such a big Thankyou to you all again...p.s. Bet youv got loads of local hair now!!
lots of love Lesley xxxxx
Hello everyone, this is my first time on this particular thread but felt I needed to come on and tell you my story, after weeks spent reading all your fantastic wonderful heart felt posts.
i was diagnosed with stage 2 bc and 3 lymph nodes involved.
I had mx/ chemo / radio through finished all my treatment on dec 16th.....however, two weeks after finishing chemo I started with bad lower back ache, went to docs she gave me painkillers and said if doesn't settle down to go back incase it had spread to my bones!!! I was terrified i had no idea that this could even happen until I came across this site. Anyway my back didn't settle so I went back to docs who said to have bone scan to check, I cannot describe how terrified I have felt over this last seven weeks not been bake to eat sleep or concentrate on anything and I know you ladies will all identify with these feeling, anyway my wonderful chemo nurse rang me today and told me all clear no sign of cancer whatsoever and all the pain seems to be from my hip area which shows arthristis which I need to see my doctor about.
I now can't stop crying! the stress and anxiety iv been suffering have been nothing like iv ever felt before! and again I know you ladies know it all too well!! but I just wanted to say I will keep coming onto this sight and reading your wonderful stories of inspiration and to Thankyou for all the positive stories all of which have held me together these last couple of months .
With love to you all and I wish us all many many more years together ..love Lesley xxxx
Stillhere - glad you are safe in your trial!
Stacey - you've probably lost your WiFi by now, but wishing you good luck with your move. I hope everything goes well for you. Sorry to hear about your husband. I hope everything goes well when you get to your new home, and hope you get some good times with your sister (there is nothing like having a sister close by, is there?).
Hugs to all. Barton.x
Oh FF, you poor thing! No wonder you have been quiet - you have had an awful lot to deal with! So sorry you are having such trouble with your funding - it must be a nightmare. At leadt we don't have to worry abput chasing medical insurance companies over here (unless you have private health care insurance - I don't), but we get the other problem of the NHS/NICE refusing to pay the massive amounts that the drug companies demand. I know they have had the research expenses, etc, but they do seem to charge extreme amounts!
Not only those problems, but all the other troubles you have had - all in one week! You have my sympathy.
Hugs, and hope things improve from now on. Barton.x
PS- what a wonderful offer from your daughters friend- no wonder you were so touched.
Here here Carolyn. I thoroughly agree. Ive not been on the forum for a while. Just been trying not to give the 'condition' anymore air time than absolutely necessary but this cold, wet, damp weather is playing havoc with my bones too. My shoulders and neck are horrendous but I know as soon as the weather turns and the sun comes out then all the aches will disappear again. Roll on Spring eh? Xx
Glad you aren't worried any more about your situation Stillhere! Extra worry is exhausting ! I told myself that in 2017 I wanted to let go of things easier and not worry so much. (Even if I have to drink wine to do it) guess I better pop the cork!!!! I feel this way...there is enough money in this world that no one should be suffering by doing without shelter, food or medical supplies! It's crazy! Every time they advertise a drug on TV as some miracle help for any illness, I tell my husband it must cost an arm and a leg or they wouldn't be advertising it!!
I grew up on Long Island, last lived in CT before moving to the UK.
I am moving to be near my sister on Long Island; about 30 minutes from Manhattan by train. In fact, I'm buying a house that is only 3 away from my sister's home. She's been in very poor health for years, so moving now I've looked at as a "now or never" opportunity.
Packers were here this morning and my wifi leaves this afternoon .... so I'm disappearing for a while!
That sounds so complicated, FF, you need to be an accountant to understand it!! You explained the grant situation very well though,I'm not sure which I prefer, your system or ours? We have quite a rigid pathway approved by NICE, we have to follow a sequence of treatments and I have read that there is some doubt about whether Ibrance will be approved because ?? It's more difficult to see the benefits of a 2 drug therapy and Ibrance is given with a hormonal. That was just one article though. Fingers crossed for you my Ibrance champion!
Carolyn, thanks for that info, you did have me worried for a minute, must ask my Onc if phase 2 has started on my trial xx