Breast Cancer Now Forum

Hi all I've been reading but not posting for a while because my treatment seems to be going ok. CA15 has come down from 377 to 300. I understand that the norm is 30, but only been on Tamoxifen and Denosumab for 5.1/2months since mets in scull and spine diagnosed.   I have been reading your posts and the reality of this illness hits when I read how most of you have been on a very cruel rollercoaster ride.   It's the arthritus in feet, knees and hip that give me problems.   I know that the cancer is dancing around my body and looking for a spot to take a rest and deposit something nasty. I am to have my first CT scan since diagnosis at the end of October, and to be honest I am terrified what it's going to show. I knew from the start of my breast cancer in 2013 that I would be lucky to go 5 years without secondry as I had 14 lymph nodes removed and they all had cancer in them.   It's just so difficult to just get on with it but we have no option. I want to stay around to see my 4 beautiful granddaughter 's  and my great grandson who is due early December to grow into wonderful people,    Sorry to unburden myself on you all but on a bit of a downer at the moment.  Lots of love hugs and kisses to you all, we are all in the same boat hopefully none of us yet are in the speedboat. We all want to be in that slow boat to China.   Crissy xxx   ... View more

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.    Crissy xx     ... View more

Evening Carolyn,   My youngest grandchildren aged 8 & 12 still tolerate my hugs and kisses, although they have no option as I grab hold of them. Yes money does work better. We have a great grandchild, a boy, due on 2nd December. Can't wait for munches and feeling those lovely chunky legs as they get older.   Been a lovely sunny day here in Brum.   Sending love to you all and loads of nanny hugs, Crissy xx ... View more

  PMOL, so, so pleased that the scan was clear. Thats the best news. When one of us has bad news it affects all who keep up with whats going on on this forum, but it is so, so good when bad news turns into good.  Hope you are home tomorrow and get to recover in your own surrounding,    Sending big hugs and my grandchildren say I give the best biggest hugs, ( its mybig arm that has Lymphodema that envelops them and my big boobs)   XXX   ... View more

    Pmol,     Wishing you all the luck in the world for the results of the scan to be negative.    Love and hugs, Crissy ... View more

  Hi Carolyn,   I am the same. When I had my treatment for breast cancer in 2013 that took 8months, I went onto autopilot and they could do anything to me to get rid of the cancer. Since I was diagnosed with secondry bone in March this year I have become a shivering wreck on my 4 weekly visits.   My stomach churns, but it does help with the constipation so I suppose thats a bit of a bonus.   These visits are vital so we just have to get on with it, perhaps we need some sort of therapy to deal with it. I just want my pilot back. (preferably tall, dark and handsome) I wish.   Regards crissy         ... View more

Hi Wendy,   I am on the same meds as you and have been for 4months now. The pain I have in my right hip turned out to be arthritus, this was found after a scan. Ask your oncoligist for if you can have a scan just to put your mind at rest, I did. I have secondry bone cancer on my scull and spine.   I had a bit of a blip with my blood test 4 weeks ago as the cancer markers had gone high. Oncolygist said it could be that the med are not working, but good news the next blood test shows the markers had gone down and she said that this happens sometimes and said meds are working. What a relief.   It's not plain sailing all of this but we have to get on with our lives. Some days I feel so well and forget I have it and others, like today , I feel good for nothing. I had a great day yesterday and got quite a lot of jobs done I had out off and today I am suffering for it.    Sending Love, hugs and kisses to you all out there, Crissy     ... View more

Hi Jellytot83,   Returning the hugs back to you. Went to see oncologist on Tuesday and the blood test i had last week shows my markers had gone down. Oncologist said the raised markers on the previous blood test was a blip and the treatment is working.    Phew, had a terrible few days of worry. I expect this one of the things we have to go thru.    Hope you have got your head round the diagnosis and your treatment goes well. Take care, Crissy xxx   ... View more

Haven't posted for a while but do catch up every few days with whats going on with you all, plus nothing to was going on until this week.   I have Secondry bone cancer diagnosed 12 weeks ago, in my spine and skull. Started on Tamoxifen and 4 weekly injection of Denosumab.    I saw my Oncologist Tuesday and she told me my cancer markers were raised. I had another blood test that day and she said if the markers had raised again I would need a scan to see whats going on.  Today I had an appointment to see her this Tuesday. Cancer markers must have risen.    Has anyone on this treatment had the same thing happen to them and what treatment did they change to? The thing is I have felt so much better since they changed Anastrozole to Tamoxifen. My joints are not so stiff or painful, it was giving me false hope that the treatment was working, obviously not. I just want to be stable for a while, as we all do.   Have a good weekend Lots of love to you all, Crissy xxxx ... View more

Hi Suze,   My onc gave me a bottle of liquid morphine solution to use when the co-codamol didn't take the pain away in my hip and lower back. It does help, just a 5ml spoonful every few days or so when the pain gets me down.   I cannot believe how many of you out there, at such a young age, are going thru this awful, cruel disease.  I had my primary in 2013 and secondrary March this year and I am 68. I don't think I could have coped if It had been 20-30 years earlier. My heart breaks for you having to go thru all this in the prime of your lives. Stay strong and positive.   Lots of love to you all, have a great weekend xxx ... View more

Hi Carolyn,  I notice you are a community champion, whats that?   Oh sorry to hear that the rash is the meds. Perhaps I need to start getting a spray tan. I may have to pay double as there is a lot to spray. Or get actor 50 sun screen.    Magnum ice cream, I love magnum ice cream. I am trying to loose weight to take some of the strain of my knees and hip, which are arthritic. When I was on Anastrozole I piled on the weight.  I was constantly filling my face with rubbish, comfort food, I have stopped buying the temptations, like magnums, crisps and choccy bics. How long this will last is anyones guess, but I must give it a go.  Just off to get myself a lovely apple without any toffee on it (lifts a bitch at times). Take care xxxxx enjoy the sun in beautiful Devon.    ... View more

Now i've started you can't get me off here.   I sat in the garden for a couple of days this week and suffered for the first time with prickly heat rash. Which drove me mad all that itching. Took piriton which helped. I even had the rash in places that had not been exposed. I have never had to use sun creams before as I go brown quite quickly. I am on tamoxifen and have the 4 weekly injection of Denosumab. Not sure if I have developed a sun allergy or could it be the meds?    One good thing about changing meds, I feel so much better since coming off Anastrozole, I didn't realise how bad the side effects were until about 3weeks ago, after being of them for 4 weeks. The aches and pains  and stiffness in all my joints, (except the arthritic ones which are not as bad as they were) has gone. No side effects with Tamoxifen or injections so far. Fingers crossed.   Hope you all have a great weekend, it's just started raining in Birmingham xxx     ... View more

Hi Stripey, I joined the group a few weeks ago. I think the first post of mine went itno detail. It was a great help putting all that's happened down on the forum. I felt a great sense of comradery with people who understand what we all are going thru. I think I am one of the oldest on here at 68, primary in 2013 secondry bone diagnosed about 7 weeks ago.  I went for my annual mot in march and went for the results 2 weeks later. The mammogram was fine. I told my oncologist that I was having problems with my right hip and my doctor said it was arthritus. My oncologist sent me for a bone scan to check that it was. The result was that the hip was infact arthritus but my spine and scull showed bone cancer. Whiich she said had probably been there 2 years. I just put the achy back and neck down to old age. The time it had been there and the end of my breast cancer treatment it appears that I was only 18months free of cancer. My oncologist said that sometimes it doesn't put markers in the blood until it has established itself. I was a mess until about a week or so ago and got up one morning and felt that life had gone back to being normal. I haven't cried or felt sorry for myself for days. People on the forum said it would come and they were right. (no antidepressants) See what happens when you get started writing on this forum, Its theraputic. You just get carried away. I pop into the forum every few days to see how you are all doing. Thanks for being out there, Love, hugs and kisses to you all xxxx   ... View more

Bandit. Great that you are on this trial and following the guide lines.  I Googled it and it seems to have good feedback and working well. Goodnews that it is now available on the NHS and so it should be, thank you Pfizer.   Hope all goes well, keep us informed. xxxxxxxx ... View more

Hi Bandit,  Will take your advice about the socks. I think I am panicking as I don't know how the bone cancer if going to affect me in the short/long term. I have cancer in about 7 places down the spine and 3inch dia on my scull. I have Lymphedema in my right arm so the the sleeve is on most of the day. It's my popeye arm, without the anchor tattoo. Your right this we should get out and do whatever, live life to the full, but just a bit frightened at the moment. xxxxx ... View more

Hi funnyface, thanks for the info. We booked a Carribean cruise just after christmas to travel in November, before all this crap started . It's for my hubby's 70th in November and we are due to fly from Heathrow to Miami, 8-9 hr flight.  After hearing about the DVT problems we both said we should cancel it but it's for a special birthday and he deserves it as he has been my rock. We have until  August to cancel it so we will see how things go and decide then.  xxxx ... View more

PMOL, I had my second jab on Tuesday. I had aches and pains after my first but did not know this may have been due to the jab, just thought it was all part and parcel of the cancer. Today i'm a bit achy but not as bad as the last few weeks, may do a spot of light cleaning.   I had the same set of appointments five weeks ago and it was so difficult not to think about them, but chocolate and wine helped. Keep us informed on how they all go and have a super break with the family. xxxxx   ... View more

Thanks for your support and all of you for your comments, much appreciated. Today is the first day in the last few weeks I have got up and felt normal (normal for me anyway).  Yesterday I went out with my sister and our husbands for lunch,had a few drinks and laughs, the food was good to and It's the first time in weeks I felt that the gloom has lifted.   Need advice on a couple of things please,  Can I still get my hair dyed, the cancer is in my scull ? The Denosumab leaflet says it can cause deep vein Thrombosis. We have a long haul flight book in November. Has anyone done a long flight and was it OK, don't know if to cancel the trip for my hubby's 70th now or wait a while?    Hope you all have a good weekend and thanks for being there. xxx ... View more

Hi All, just to let you know how today went. After having another sleepless night and geting up with an upset stomach I got to my appointment looking a total wreck.  The news that nothing was showing in my organs, except for a thickening in my stomach wall which could be precancerous and they will keep an eye on it, was somewhat of a relief. I have to carry on with Tomoxifen and the 4weekly injection of Denosumab until such time that these stop working and the clever cancer gets immune, I so hope my cancer is as thick as S***. Then as you know, they try something else, ???  It certainly help having this site and reading all you journeys and knowing that there are lots of lovely people out there going thru the sameish.  Love, hugs and kisses to you all, xxxxx     ... View more

Hi all, I am new to this site and thought as you all have gone thru the mill I would like to join you. I am 68 and had breast cancer in 2013, had a lumpectomy and lymph node were all taken from under my right arm, all infected with cancer, so no suprise when I complained about pain in my hip they found bone cancer in my scull and in several areas down my spine, this was 4 weeks ago. My Onc took me off Anastrozole and put me on Tomoxifen and a 4 weekly injection of Denosumab. I had a scan 2 weeks ago to see if it had spread to any of my organs, I get the results tomorrow and at the moment my stomach is doing cartwheels. For the last 4 weeks I have gone from anger to despair. My emotions have been all over the place. I know I have to get on with this but it is so hard , as you all know. My GP suggested I go on antidepressants but I don't want to go down that road if I can help it, Do they work? My best wishes to you all xxxxx ... View more