Wishing everyone here on the bones thread a very Happy Easter! Lots of chocolate eggs! Unfortunately the weather is going downhill..........but that gives more time for eating chocolate bunnies. Hope you all have a good weekend. I am looking forward to the much longer days again.
I haven't been on the forum much recently but I just wanted to wish everyone a very Happy Easter. It's a beautiful day here in Sussex and I have picked an enormous bunch of daffodils from the garden and started to tackle the flowerbeds.Just to feel some sunshine makes everything seem better.
Cyber hugs and huge Lindt Easter eggs for you all! xxx
Thanks Scoobiesue! And thanks to all those lovely blood donors who are keeping me going! I think that my Hb levels have never been great but they were at 65 on Wednesday when a normal figure for my age would be 120. No uphill climbs for me on holiday but I shall enjoy being somewhere warm for the next week and not having to work, commute, wash, clean and cook!
Hi Elily. I have multiple bone mets. As yet no mention of a transfusion. I think it may have more to do with the chemo . Take care. Hope you are full of energy today. Love Sue.xx
I spent yesterday in hospital having yet another transfusion of red blood cells. Anyone else who has had frequent transfusions whilst on chemo? Now topped up, so I should have a bit more energy for my holiday, but expect that I will need another transfusion in a month. Is this common for bone mets? Rest of blood, apart from red cells is apparently quite reasonable.
Morning everyone for a change it is nice and sunny here in the north.
Lynn as Julie says I sympathise too I have had a week of diarrhoea with blood but I was also constipated before hand so I think mine was through straining but it did get me worried. I put mine down to cape as I do get some problems in that area at times.But I always have since I started this C journey maybe Julie has somehing with the AdCal worth thinking about. I try to incorporate as much dark green veg as possible.
I do hope you go on ok with the colonoscopy next week let us know how you get on. xxx
Lynnq, I sympathise I went through a period of really bad tummy problems. Had a colonoscopy and all was well, bit of diverticula (sp?) but nothing sinister. I have been trying to eliminate things from my diet to see if I can pin down a culprit, I'v also started taking probiotic capsules and things have calmed down a lot, only the odd episode for a couple of days now as oppossed to weeks of daily diarrhoea. Can I ask, are you taking AdCal? I have a feeling they are contributing to my tummy problems. If the blood is a new thing it could be that the dirrhoea has caused a bit of inflamation. Good luck! xx
Hi everyone I have not posted for a while and just done a quick catch up. Welcome to all of the new ladies I see you've received a warm welcome from our 'regulars'
We do not have any SBCNurses at our hospital but one of the BCN has shown an interest in the secondaries side of things so the hospital has allowed her to spend an agreed percentage of her hours working with SBC patients. She is often with the Onc at clinic and is very helpful. The BCNurses are very good though and I was told when secondaries were first diagnosed to ring them anytime, on the couple of occasions that I have done they have been very helpful.
regarding the letrazole side effects I found that other brands than Femera caused nausea and increased joint pains. SEs are much more bearable now, but I did have to insist when the practise manager (not the GP) insisted that they were all the same.
i have been having problems with my bowel on and off since before Christmas....awful diarrhoea (just lately with blood) - sorry tmi - at times so they have fast tracked a colonoscopy for next week.
I know that this is the bone mets thread but I also know that you'll all understand, easier to type than actually speak about it.
Hi Linda. Not sure about treatments. The onc wants to have a good look at my scans. She will see me in a couple of weeks to discuss her plans. I am so much happier with my new onc. She seems to be on the ball . Very cold here today in Darlington. Planned a trip to Colemans in Soth Shields but maybe not such a clever idea over the holiday period. Happy Easter everyone. Love Sue xxx
Welcome Janet you have came to a very friendly place. I understand how you feel I felt the same way when I was diagnosed back in 2009. Bone mets was found at the same time as primary. If you have a word with your bcn which I did they were able to send me for councilling which really helped me. Once treatment plan is sorted you will find will adjust to the new norm. Please feel free to ask any questions. Enjoy weekend. Linda
Great news. Are you staying on the same then? Weather is really cold today. Wondering when Spring is going to begin.hoping it is going to be good as it is first full summer for 31 years since I retired at Christmas although I was off from end of August 2009 till May 2010 I was not in a good place then going through the chemo etc. Have a good weekend everyone. Linda
Morniing Ladies well it's almost noon
Welcome to the forum Janet sorry you have to be here but the bone met thread is a good place to start. You will find more information on here from other ladies with simular treatments and secondary mets. I have bone mets along the spine ribs pelvis femurs and tibia I also have skin mets which depress me most. But I have friends on here that have helped me so much as you will find along your journey. Don't forget to rant and rave on here if you have to we all do it but most of all remember you are not alone.
Hi Nicky I hope you have been somewhere nice. We are planning to take the caravan out next week to Bridlington it will be the first time for over a year. My appointmnts and treatment seem to get in the way last year I ended up in hospital twice and nearly a third time. But this year I intend to get out more I think it is easy to feel the 'C' keeps you in.
Hello to everyone I hope you have a nice Easter xxx
Good morning Janet. A warm welcome. You will find the ladies to be a terrific support. I have multiple bone mets in my spind neck and skull. When they sort out the pain life can be some sort of normal. Very few SBCN's around. The BC nurse in my hospital is very good. However I am not her priority. Yesterday in clinic with the onc she had to leave mwe to be with a PBC patient. Tell everyone involved in your care how you are feeling. Things can be done. Glad you found us.Love to all. Sue. xx
So glad you have posted on here as there are lovely ladies that will soon spring into action with advice and comfort. I am newly diagnosed hip/liver mets in jan 3weeks after primary diagnosis.
i am sorry you are feeling like this, have you tried the help line on this web site ? It's easy when you feel tired and yuk to have lots of dark thoughts especially if you feel neglected by your care team.
Please take care of yourself and well done for reaching out.
Ive been away for a few days (grabbing those trips whilst I can!) so forgive me if I forget everyone's news or rants or results!
welcome Janet - I think we all know what you feel like, the medication, whatever it is, that keeps us alive sometimes gives us awful side effects and its those that I find wear me down. I definitely back up what everyone has said about different brands of hormone tablets. I found this out about 5 years ago when I first went on an AI and boy do different brands make a difference (to me anyway) I also know this isn't just in my own mind and when I spoke to my GP about it he said that although the active ingredient is the same it is often the release mechanism that causes the problems, also other ladies have commented on the filler ingredients and coating ingredients. One brand even had tartrazine in it, which is known to cause allergies! Worth making a note of the one/s that suit you best (ie cause the least extra side effects) and let your pharmacist know. Mine gets in the brands I have said are better and avoids the others and it is down to costs - no other reasons.
scoobiesue, well done with the results, a relief I'm sure and hope if you are getting a blast of rads that they improve your bone pain.
As to sbcn's I think any of us who have one (or who have even seen one!) is very lucky. I have never seen one in the 8 years I've had mets and I really think it's us that needs it, more so than for primary ladies who, once through their more intensive treatments often don't need the on going support and advice. Is it really too much to ask that a bcn in every hospital just learns about this disease's progression and can then be there to help? Grrrr.
Anway, rant over! Hope you all have a good Easter weekend whatever you are doing.
Thank you ladies. I do have more bone mets but the onc only calls it progression if it moves from the bones to other areas. I hope you all keep as well as possible. Happy Easter to all. Sue xx
I have to say the secondary BCN in Oxford is a blessing. We were promised one over two years ago and I had become cynical when we were told we were getting two (two part time position).I had to contact them 3 times in the past coupe of weeks due to mix up with appointments, wrong hospital, request of lymphdema clinic etc. Every time the isse was solved within two hours. It would have taken me months to solve the issues of duplicate appointments. The really remove some stress in my life.
On the subject of different brands of letrozole or tamoxifen having different side effects, I have to say that I never noticed. For joint pain I take 1000mg of glucosamine daily and have done so since I started tamxifen 8 years ago.
Take care ladies.
have a great Easter.
Hi Marion P and Julie
interesting to hear that some hospitals do have SBCN's I wish our's did but as Julie says it could be a question of costs we only have one BN at our clinic she is good but she cannot spread herself among so many. Our original BN's are at another hospital on a Wednesday the reason being when our new onc came she changed the clinic day from a Thursday.
So maybe it is not their fault xxx.
Great news Sue
I am so pleased you have no progression in your bones and the rads should help the pain in your neck onwards and upwards as they say ((((hugs))))
Scoobie, glad you got to speak to your Onc and pleased no progression I'm sure the rads blast will help with the pain so hope that gets sorted quickly.
MarionP, that's interesting. I know there are some SBCNs around but very few and far between! I thinkin some ways we probably need them more with secondaries but unfortunately for most of us the funding and maybe even the interest just isn't there to provide us with the service. Glad that Oxford has at least some specialist nursing support
Just to say re sbcn, there is one funded by Macmillan at the Churchill in Oxford with two nurses job sharing. They've only been in post a few months but at least our needs are startng to be recognised.
Called to the onc this afternoon. She was excellent. No progression showed on CT scan. Increase in bone mets. She will treat my bad neck with a single blast of radiotheraphy. So much relief . Love to all waiting for results. Sue xxx
I wish we could have the weather Carolyn is getting the last few days have been dull and cloudy here in S.Yorkshire Don't get the seagull poo only collered doves poo.It's been funny reading about it though.
Some of you have been quite low Sarah Louise I hope you are feeling a little better and Sue I do hope your CT scan will be ok. I had progression in the bones last November 5 all in bones I try not to let them bother me but some do remind me that they are there my last result was that they are healing how much is anyones guess.
Sharon I like your suggestion of a secondary breast nurse we could call her sbcn but I don't think that is going to happen mine when I have seen them which is very rare have touched on it but seem useless with information.
Janette I know what you mean about feeling old I have spent the last 12 years with MS and then cancer I can barely walk at times now my back is starting to play up where by I am limited for how long I can work on something cleaning gardening and even putting clean sheets on the bed I feel useless. I have been old long before my time.
Letrozole didn't work for me I was on it 9 months as for different brands I fully understand what you mean. Way back in the nineties I was on Tamoxifen and the chemist gave me a different brand to the one the hospital started me on. It was so much different it made me feel sick and I refused to take that brand in the end so they put me back on the original. I think they try pushing cheeper brands on to us.
Hello to Elily Lindyloo and FF good to hear from you. FF now you have lost all that snow you can start to enjoy some outside activities and swimming sounds a good idea bet it's lovely over there.
Well good luck to everyone waiting for scan results and love to everyone xxx
Thanks Linda. Feel very anxious as I know the bone mets have progressed. They have brought my appointment forward . Another reason for me to panic. Hope all is going well with the decorating. Love to all. Sue xx
Good luck with your scan results today. Least u have not to wait too long to get them.as I mentioned before mine are going to take 3 weeks at the earliest. I hsve to wait 3 weeks before giving them a ring to make sure thry have been reported after thst I will get appointment. Been busy this week painting the ceiling and walls in the porth. Hope everyone waiting for results get the results they want. Love to everyone. Linda
Wow girls you have described me in a nut shell! The letrozole side effects you are having is the same I'm having. I also am taking ibrance with it. Ibrance is a chemo. I started on metropolis and my knees were horrible, but I hadn't put 2 and 2 together. I thought I had injured them. Then it hit me after a few months that it started about 2 weeks after I started the letrozole. I also feel like I've list a lot of core strength. I tried to God or a walk the other day and felt like I couldn't hold me up for long. I was fine back in September. My hubby and I went to a sporting store the other day and it has a target shooting range with air rifles. Kids shoot these. I had to put it down about every 2 shots, I didn't have the strength to hold it up. This has all happened since last fall. I didn't know how weak I got until this past week. I guess with being inactive over the winter, I didn't realize it. At my work I'm not in my feet much so I hadn't noticed. I'm due for a CT scan on the 29th and oncologist visit on the 31st. I will be discussing it with her. I'm blaming the meds but hoping the CT doesn't show progression that could be causing it. I think I'm going to sign up for some pool exercises to regain some strength, but easy on the joints. FF
Thanks elily and scratch, I've got some Activis letrozole in the cupboard I might try those and see how I am on those, elily that is just how I feel, one day I can be full of beans and then the next feel 100 year old! Hate feeling like that and having to spend most of the day on the settee, want to be out and about and in work with my friends having a giggle! Hey-ho I'm sure I will get sorted soon.
Hugs Janette xxxx
I found Letrozole hard work - I went on it immediately after my first lot of chemo, so was confused whether it was post-Tax tiredness (though it felt worse than weeks 2-3 of a Tax cycle). It didn't work for me so I then went onto Capecitabine. One day I could hardly pull myself upstairs, the next I could run up!
If the Letrozole is working for you it would be worth swapping brands as there are lots of posts on this forum indicating that some brands are better for some people than others.
Hi Carolyn, I'm on the branded femara which is meant to be the "kinder one" I totally agree with what you said about s / e from hormone treatment being better than chemo........that's my biggest dread!! I see my onc at the end of next month so will see how my CT and TM results are and depending on them I may discuss trying another hormone treatment that suits me better?
Hugs Janette xxxx
I have a different brand of letrozole this month and feel different. I've got cipra this time and I think hair loss is more and weeing a lot more.the way I look at letrozole is if it does it's job....it's better than chemo which I dread if I have to go that route. Have u tried taking a cod liver oil tablet daily to help with joints?
I've just had my bone juice and not looking forward to aches and painsi got last time.
Why oh why have we got this dreadful disease when there are evil people blowing up stations and airports in Brussels etc. Just watching the news now.
On the subject of bcn.. when I was dx with primary..I literally fell over them in clinic... where they now? When we need to ask them questions. Have they been abducted by aliens? Or been reduced due to cost? OR just not interested in us secondaries people? I haven't seen one since October when I first got back in this cancer mallocky again.
Moan over. Anyone got a Seagull catapult for the little blighter that has targeted my car twice today.
Hugs everyone xxxx
Hi ladies, having a rough day today 😞 came home from work at lunch time and just went to bed for a few hours, still struggling with hip and leg pain and sooo tired!!
Carolyn, how are you coping with letrozole? Oh I really don't like them, I feel 100 year old on them, I ache so much, always tired, and generally don't feel "like me" I was on tamoxifen previously and was fine with no s/e.
Scoubiesue, I agree there should be breast care nurses for specifically for secondary cancer's, I can't say I find my bcn that helpful.
Hugs Janette xxxx
Cold but dry in the North East. Going out to potter on one stick. I would like to be on my kneeler sorting out the weeds. That is most definately not allowed. Onc tomorrow. Appointment brought forward, I know the bone mets have increased. Wait and hope situation. Good luck to all waiting for scan results. Love to everyone, Suex
Don't talk to me about seagullls! Everytime we have our windows cleaned - splat!!!
Hope you don't have to wait too long for scan or even more importantly for the results.
It's quite chilly here in Sussex today but the sun is satrting to burn through the mist and we could have a nice bright afternooon, fingers crossed.
Hope everyone gets a little sunshine today xx