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
It all sounds very complicated and not what you want to have to deal with when you have so many other things scrambling your brain. We hear about the political controversy surrounding medical care in the USA but not how it all actually works. People say that there's so much that can be done for cancer these days but unfortunately it's very expensive and presumably the costs of the drugs currently available are funding the next round of research.
I really do hope that you can find a source to continue funding Ibrance for you - you deserve it, you have battled through such a lot.
Lots of hugs B xxx
Stillhere, What was explained to me about the grant was that money is donated to the organizations to fund certain drugs for certain cancers. When they run out of money for a drug and the cancer that it was donated for then there is no more funding left. They have to wait for more money to be donated.
Stacey where in the US are you from? If you came back where would that be? The Medicare is confusing! Especially the Part D drugs!
I've had a cough/cold and last night my eye was watering. Today (Sunday) I went to the NHS drop in medical centre for my eye. I waited a while, but I left it was with a free tube of antibiiotic for my eye. I will greatly miss the NHS!
I am an American living in the UK for nearly 21 years. My husband died in August and shortly afterwards I was diagnosed. I've had to pay for nothing. No meds. No scans. No doctors visits.
However, I decided that whilst I was well enough I would return to the U.S. to live near my sister. Head versus heart decision.
I have spent days and days trying to figure US medical care out. So I have Medicare A, paid for Medicare B ... paid for the drug bit and also the Medicare supplemental to pay for (I hope) the copay that Medicare does not cover. I am so confused and also so saddened that the US when it comes to medical care is not like the UK or most of the Western World. Not a political statement ... just a comment about one more worry added to my growing list. Neither system is perfect. The NHS will not pay for some drugs. Insurance companies will not pay for some drugs. Budget balancing and/or profit before life. So much for civilization.
I hope you can find a grant from somewhere FF.
Ladies I'm on what they call Medicare here. You are entitled to it at the age of 65 or 2 years after you become disabled. There are different sections to it. Medicare part A is free and overs part of your hospital bill, Part B I pay $107 a month for, it covers Dr, tests, and IV drugs. Let's say you are billed 10,000 for your IV chemo. Medicare has agreements with hospitals and might say no it is only worth $6,000 they will pay 80%of $6,000...$4,800. Patient is responsible for $1200. To get the $1,200 paid you buy supplemental insurance, this cost me $165 a month. It pays the 20% that Medicare doesn't cover, but only pays if Medicare pays for the service. If Medicare says no to be service the supplemental doesn't pay and you pay what ever the hospital bills. Then there is Part D that I pay $ 30/ month for. It covers prescriptions. Your medications vaccines etc. It has tiers to it. At the beginning if each year you have to pay a percentage for your drugs. Ex: Ibrance is billed at 10,400 and something for 28 pills. Medicare might say it's worth 5,000 but will only pay $1,500 of that when you a 're at the first tier(level)! They don't pay 80% of drugs. I would then be responsible to pay $3,500. They call this is copay. This is my case right now. My copay for this month is $3,500, but I had found a company that finds grants to help you pay your copay. I have $2000+ left on my grant. When you apply it I must pay $700 to get it. Next month Medicare will say wow you spent this much money on drugs so far so we will pay more for your drug this time and you will pay less. My copa y would be around $2000. Then the next level is Medicare pays nothing bc they say you cost too much, but they say that the places have to reduce the price,. It would cost me around $600. The last level they decide you have paid enough that you are considered catastrophic. At this level my copay is still $500! I would have to pay all those copays til August since I have no grant money. In August the place said they might take me back. So to get to August in hopes of help I would have to pay about $5300. The prices for my Medicare, supplemental insurance and prescriptions is just for me. My hubby has to pay them too. These payments add up to about $600 a month. Hubby with his medications will run out if funds in May and will have to pay $400 for his copays.
LOL, If any if you noticed I skipped Part C...it's a whole different type of Medicare for healthier people..so I know nothing about it!
Hi FF I'm not surprised you are feeling frustrated, how can a grant suddenly stop until August??! Don't they realise how important it is? I'm so sorry, I've heard that Pfizer do have a compassionate fund (not for UK patients sadly) so I'm hoping that you can carry on with that.....
As Carolyn said, at least your mirror didn't break, stupid superstition but 7 years is a long time for bad luck!
Carolyn, hi, has there been a hold put on some Ibrance trials? I'm still going with mine, next CT scan not until February so I'm enjoying some chill time. Happy New Year everyone xxxxx
I'm here! Just majorly frustrated! Just a bunch of little things adding up. First the problems getting CT booked when I wanted, then oncologist going to India, having to get oncologist I don't like to read CT and see if I could stay on treatment plan, then I called the specialty pharmacy to order my ibrance I had no refills left, I had to get hold of oncologist I don't like again to send new prescription, then I called pharmacy again to be told I don't have enough grant money left to cover my copay and that the place that gave me the grant money wont give me anymore til August. I can't afford the copay price, so I can't get my ibrance. I spent 4 hours at the cancer center with a social worker trying to find me a grant.There is no places left with any money to give out for ibrance! I signed a bunch of papers and on Monday they are going to try and go through the manufacturer Pfizer to get it. My oncologist will be back from India on Monday to sign the papers. Furious I might have to quit the treatment that is working so well and go back to infusions. Plus I don't have any idea what the next game plan might be. Oncologist I don't like looked at me and said Oh well if you can't get it, you can go back to an infusion chemo. He said infusion isn't that bad!!! I was ready to scream at him. It's not just going back to infusion it's one of my life lines out the window. I have put up with so much pain of over the last 18 months and losing so much energy and leg muscle to stay on this combo bc it is working so well. It just frustrates me that I might have to give up bc of money!! Sorry for the long rant and being so quiet t he last few days! On top of all this in my master bathroom there was a big mirror 2ft x 3 ft. It sat on our pedestal sink leaning against the wall. I have no idea why hubby has never fastened it properly. Well, I was sitting on the edge of our tub, directly across drying my hair. All of a sudden that mirror fell forward, I dropped the hair dryer put out my arms and it landed flat in them without breaking!! I screamed bloody muder, when I saw it falling! I thought for sure I was going to get cut! It was heavy. I couldn't get up with it in my arms. Hubby had to lift it off of me! I did get some nasty bruises on my arms. I was lucky. Then Friday, hubby was plowing the drive down our hill and lost the breaks. He was able to drop the plow so it so would help stop him and shut the truck off. Truck got towed, broken break line! Our mechanic known as about my health and Ross' health. He charged us for parts and no labor. I had taken him some homemade soup when we picked it up. Also my daughter's best friend who we consider our adopted son offered to pay my compacts for my ibrance. I won't let him do that! It was an awesome offer, made me cry. This is only the first week of 2017! I promise f myself to look for positives. OK! Lucky hubby and I didn't get hurt! As far as chemo, lucky I do have other treatments to try! FF
Glad to hear your positive news and that you're feeling better than a year ago which is amazing.
Hi all! I'm here too, dropping in before we go out to dinner round a friend's. The decorations are down and Steve and I have started a healthy eating routine.. wonder how many days it will last!
We are going mainly vegetarian so I've been on line and printed out lots of easy yummy recipes.. going great so far! Feeling very positive about 2017. My doctors didn't expect me to make it this far and I'm sooooo much better than I was a year ago when diagnosed.
i hope everyone is managing to avoid the coughs and colds and tummy bugs that seem to be rife.
Good Lord, Carolyn, I actually believed you for a minute! My sister and friends always tell me how gullible I am!
I have been fairly active today, and have at last put away all my Christmas decs (how is it that you ALWAYS find one dec left out as soon as you have put the rest away?), and done some sorting out of my craft room (although that still looks a little like a tornado has gone through!). I have also finally found the bits that I thought I had lost in my move 8 months ago (has it really been that long?).
Janette, I hope your daughter doesn't lose stuff in her move! I bet she is really excited - pass on my best wishes, please. I hope everything goes smoothly for her, and the weather stays fine.
Hugs, and good wishes to all. Barton.x
Hi Carolyn, yes it has been quiet on the boney thread this week hasn't it.....maybe that's a good thing? Must be a sign everyone is well????
Well I've been busy window shopping for my daughter's new house, she moves in at the end of the month 😣really going to miss her but must admit also looking forward to having a tidier house and less washing!
Just made a cuppa and finishing off the last of the mince pies 😆
Hugs Janette xxxx
Hi ladies, just wanted you to know that i have sen my onc today and although he agrees the lmps under my skin are suspicious he still wants to wait until i have had a scan before putting me on a strong chemo that will act systemically maybe for something that is a local recurrence. I am seeing him again in 3 weeks so will know more then. I already know this is a bad sig and that i will have to have the treatment bt at least he is being extra sure. Thinking of all tjose with imminent scans, results. x
Just want to give a shout to all those facing scans and doctors appointments in January, that I'm wishing you the best of luck.
The inside Christmas things are packed and stored away. House is clean! Outside Christmas still needs to come down, but it has rained for days! Supposed to be clear for a few days but cold! Guess we will do a little each day! Need to get them in before they are froze in til Easter! Hubby 's birthday celebrated today. Back to work tomorrow. I've been off for 2 weeks. Nothing planned for this coming weekend so looking forward to some quiet time. Definitely partied out! FF
Thanks Natalie and Julie.
i had 5 doses of radio in one shot, felt ok first week but have more pain this week, which is 2 weeks after I had radio. Felt really tired this week and on morphine to kill the pain. Just hope it gets no worse and the cape is working. Have a CT scan on 23 January to see if ok.
A happy and healthy new year to everyone.
Hi Bousy, just wanted to say a quick hello a it looks like your post got lost in all the Christmas posts. Sorry you are having pain and hope the rads will make you more comfortable. It often gets more uncomfortable before it improves so don't worry if that happens for a few days. Hope ypi are doing ok with Cape, Ive no advice but I'm sure some of the others will give you some tips.x
Our tree is still up, it normally goes up quite late and we leave it up till 12 Night though usually lad up debating when 12th night is! We have a living growing tree normally, replacing it when it fails to grow/dies. This year we coudn't get a growing tree so had to get a cut one, never again, we are getting too old and not healthy/strong enough! Will have to see if we can find a realistic fake tree
Hi ladies, wishing you all a happy and healthy new year!
Carolyn, it's been the big clean up in our house this morning too, and yes I also missed a decoration! Mine wasn't a bauble it was a little christmas wreath I have hung on the wall in the living room 😤 love to get my Christmas decs up but can't wait to get them down too! The house looks so much bigger and tidier now.
Remember me posting about coming home early from Gran Canaria because of the rubbish weather /hotel? Well we also had to come back early from the lake district too because of the water infection returning now on my 3rd course of antibiotics! Before Christmas I was stressing about my bones playing up or getting a cold/flu over Christmas didn't think it would be a water infection messing things up! Hey ho bless made plans and all that!!
Hugs Janette xxxx
Carolyn, I haven't done that with the ornaments bc we don't carry those to the attic until the tree is outside! Now, the decorations that I have around the house are a little different, because I let them out a few days longer. I always find something I missed. I do stick the missed item in the bottom of my China cabinet until the next year. Not climbing in the attic for one thing! It's like me packing a suit case, always miss something! FF
Carolyn, cant believe it, the same happened to me!!! I just lifted the lid of the nearest box and shoved it in so it will probably be lost forever anyway.!!x
FF, what a pain about your onc appointment. The limbo time is the worse isnt it. Lets hope like last time the 'something new' wont be anything at all. xx
Love and best NewYear wishes to all