Feel like the only one in my position

Hello fellow community just need some assurance if there is any

I was diagnosed with Breast Cancer nearly 3 months ago.  First time diagnosis - the wind was very much taken out of my sails when after a PeT scan was informed I had secondaries in my bone - small volume in lower spine and hip but non the less secondaries.  so very quickly have had to absorb that I cannot be cured and prognosis is very difficult to come to terms with.

I started on Letresole pretty much straight away and fingers crossed none of the side effect that some others appear to have had.  One round of Zodalex - no side effects.

However I managed one cycle of Ribociclib and  during the one week break the blood tests for one part have not held this has been the same for 5 weeks so am taking Letrosole only at present.  Count has been coming back down week on week but they want to wait for further reduction then hopefully will look to reduce dose (was on 600mg a day)

sorry for long bit above now for the short bit - Is there anyone her that is in my or a similar position. I  have not had a Mastectomy, nor chemo so on being treated with just tablets (well tablet once a day).   just feel a bit isolated well a lot.  any advise would be appreciated

  • Hi 

    I'm sorry to hear about your breast cancer diagnosis and it must have been a great shock to discover, at the same time, that it had already spread to your bones. Although I've not been in that position I can well imagine how difficult it must be for you to come to terms with your diagnosis. However, there are lots of people who are living with an incurable but treatable prognosis.

    I noticed that you have also posted this in the secondary breast cancer group and hopefully someone in that group will be along to offer their advice. You may not have had any replies from this group as it's quieter and/or nobody in this group has had the same experience as you.

    I'm hoping that you saw the reply from one of the cancer nurses to the question you posed a couple of months ago as she gave plenty of useful links on how to cope with your diagnosis, etc. If you didn't see it then clicking here will take you there.

    Wishing you all the best

    x

  • Hi iamLyn

    i know its been awhile since you posted this so hopefully you get notifications and will see my post. 

    You are not alone. I am newly diagnosed beginning of September with a few bone mets and after many tests to find the primary have been told it's lobula BC. No lumps, etc only showed up after nipple biopsy. Which should have been diagnosed 3 years ago when I first had nipple problems and MAmmagram did not show anything. Even MAmmagram in March this year and one 2 weeks ago did not show anything.

    i have my first meeting with oncologist tomorrow to discus options/treatment plan. It seems that people are been offered different treatments for same condition, so I am confused.

    Hopefully you are doing fine and things are looking up for you.

    kind regards

  • Hi Razzy,

    Thank you for your kind reply.

    I hope your meeting went well with the Oncologist what treatment have they offered you ?

    I am on Palbociclib and Leterzole with monthly bone juice infusions. Have had once scan since treatment and has shown as stable.

    My next scan is in two weeks so I know that I will start to get scanxiety the week before.

    I agree that there seems to be so many different treatment plans it makes you question your own.

    I have read your profile, you must be so mad they did not pick this up 3 years ago and it must be hard.  Its madness and such a shock. I was sucker punched for a while when I was told.

    Mine was picked up at routine mammogram (50). I was not feeling unwell or anything  and am still feeling the same (hope to stay this way for a while. I work full time and find this keep me somewhat normal and is a distraction.

    There is a lot of support on this site from people who really know what you are going through. Also fellow member has tried to start a thread on the secondaries group Positive stories only which is worth a read.

    Please let me know how you got on and are getting on.

    Hugs from a fellow traveller

  • Hi IamLyn

    Went better than expected today. Very nervous this morning nearly threw up in car. Hospital 45 minutes from my house luckily in future will be receiving treatment at my local hospital 5 minutes away. 

    Oncologist lovely, explained everything. Told me I was not going anywhere for a long time which was a relief.

    I started on letrozole today, will then be starting on palbociclib and Denosumab in 10-14 working days. I have a dentist appointment tomorrow to check teeth. Will be monitored monthly. He said there are lots of different treatments if one fails we move onto the next.

    im not in pain at the moment which has I find strange so no radiotherapy yet.

    My back is very unstable and  they think it is worse than the bone scan showed. I am not allowed to bend or lift anything. 

    I too feel fine and am working full time and will continue to do so. 

    What is the bone juice you are on?

    kind regards

  • Hi

    Firstly glad to hear the appointment went ok.

    I appear to be on the same treatment as you.  I was started on Letresole straight away.  After shaky start on Ribociclib (I only managed one cycle and then had to wait 7 weeks for my bloods to go back to normal) was switch to Palbociclib,.  I started on the medium dose for one cycle then as I was doing well they increased by dose.  so am on 125mg take one a day for 3 weeks one week break.  I also had to have dental work done before being put on the chemo tablets.

    My card for bone juice shows it to be Alendronic Acid but nurse called its something else but I am going to query the bone juice with her to find out what it actually is. I have been told I have osteoporosis in the area were they think cancer spots are so that's something else for me to query.  

    I have not been offered Mascetomy/Radiotherapy or chemo IV.  You are right it is so confusing that people are on different treatments.

    Would say knock on wood at the moment I am not have too much sickness or trouble

    How funny is this to be completed as hubby is just dishing up dinner lol 

  • So after a nice dinner ....

    Since I have been on Palbo (Palbociclib) my bloods have held at the higher dose so now have blood once a month (rather than weekly) which is taken on my weeks break the day before I have bone juice and pick up the next lot of chemo.

    I do ache for a couple of days after bone juice but nothing to troubling. 

    My next scan is middle of October so I know I will be anxious the week leading up to it.  Also need to work out if I want the results before I go away or when I return.  Am going abroad for a couple of weeks November time so am in a quandary as to if I want the results or not.

    Please let me know how you are getting on with treatment and how you are.  You can always send me a private message if you need to I will get back to you.  I don't always spot the posts right away I am not very techno savy but am learning.

    There are a lot of people in our position and I hope that by also reading their stories it give you some comfort and positivity.  I am still very much at the beginning of this and am learning all the time not just about this crappy condition but myself as person.

    Cyber hugs to you

    Lyn

  • Sounds like you have the right combo of treatment Lyn. I also was waiting for results before I went abroad this year but they hadn’t come through on time, it didn’t bother me at all once I had the sun in my face and the wind in my hair and I had the best time!!! I didn’t ache at all, completely pain free! 

    I will now get my results tomorrow and back in the chemo so hoping for good news, I feel great and don’t have any new pain so fingers crossed xx 

    much love jo x 

  • Hi Jo

    So nice to read you had a wonderful holiday.

    I am looking forward to getting the sun on my face for sure and a bit of Caribbean winter sunshine it is hopefully going to be truly wonderful break for me.

    Fingers crossed for your results tomorrow I truly hope they are favourable

    Please let me know how you get on

    much love to you

    Lyn

  • Hi , here is the link to the positive stories mentioned by . She is a self-confessed technophobe, hence my interruption!

    Point down tone2Point down tone3Point down tone4Point down tone5Point down tone2Point down tone3Point down tone4Point down tone5     

      community.macmillan.org.uk/.../positive-secondary-breast-cancer-stories

  • Hi 

    I have an appointment for Monday at local oncology department so hopefully start other treatments then. When I got the call they remembered me from when I used to take my late husband and father. Been dentist today everything fine.

    Had a nice visit from palliative nurse. It sounds as if they look after cancer patients really well, I will be able to even get a same day appointment at GP surgery If I need one. Usually need to wait 3/4 weeks. She seemed surprised that I want to carry on working. She looked at by bone scan results and said my back is very unstable and I need to be very careful. 

    Good news is that they are trying to organise support sessions for anyone with our cancer aparantly there a few people in the area all different ages and even some young ones like me she said. I'm 54 have not been called young for a long time. I must admit I do look young for my age.

    Are you going anywhere nice on holiday?

    I usually go away on my own but won't be able to do that anymore. This time last year I just had came back from Spain. I bought an annual insurance policy which needs renewed don't know whether to renew or not. I save 10% if renew.

    Fingers crossed for your next scan.

    Hugs to you too

    Joanne

  • Hi

    Fingers crossed for you tomorrow.

    joanne

  • Good luck for Mon razzy

  • For Razzy/Jo and Peebee/Jo

    Peebee How did you get on

    Razzy - Good luck for Monday

    As Noswad1 and I say sending chicken legsFingers crossed tone3- it is actually crossed fingers but Noswad1 says they come out looking like chicken legs and I have to agree.

    My BCN also mentioned they are starting a group for people in our position to get together and have a chat am waiting for all the details and they want it to be a positive experience for all.  Its not set up yet they are waiting confirmation for a the venue.

  • Well I am back home armed with capcitebine ready to start my next cycle.... and no results! I couldn’t believe that they weren’t back! I had the scan 5th August! I’ve never had to wait this long! I feel fine so I’m hoping my insides are! She said my bloods were amazing and she said if something was wrong they would of maybe seen a change in the blood result so even though that can only indicate something is wrong it ain’t the same if hearing the proper results. Janine has emailed them to find out what is taking that long, so gonna be a phone call hopefully soon to let me know as my next scan is due this month! 

    Hope everyone else is ok, I’m just relaxing with a gin and watching the bake off Grin 

    Love Jo xx 

  • Hi Jo

    Really good to see your bloods are all good actually amazing.  How S***TTY your results did not come through hoping you will get them in the next couple of days.

    Gin and bake off sounds like a nice combo.  We have not had any TV Service for a couple of days, finally have an engineer out tomorrow to check the box.  So have had to resort to actually having a conversation with the other half LOL.  So now I am in the dining room and he is in lounge on the kindle which he has taken off me and is using as a lap top. 

    Have a good weekend and crossing those bit and bobs your scan results come through soon. 

    I will start to get anxious next week my next scan is imminent.

    Much love Lyn x

  • Eeeee..... what a long day!!! 

    Ive been up to Newcastle with my mam and granddaughter Phoebe to see Disney on ice! 

    It was sooo good! I think I watched phoebe more than the show, seeing her dressed up as Elsa from frozen the movie and then her little face when out skated Elsa she was jumping and clapping her little hands and waving like mad incase Elsa saw her, oh my heart Heartbeat that was a magical moment... worth climbing up the stairs in the rain, then another flight and sat in a cramped chair for and hour and a half JoyJoy the things we do for love! We have since came home had a hot bath, some tea and she’s snuggled up in my bed while I have a sneaky gin! 

    Bring on the Christmas festivities!!!

    Hope we are all well ladies.... much love Jo x 

    PS still no results Thinking 

  • Hey hey 

    My name is Cazzy and I not been on this forum. For while thought I'd introduce myself ha I'm Cazzy aged 32 breasf csncer stage four and basically it's spread to all. My. Bones in my body plus crushed vertebrae was diagnosed. In June but could been like. Least two years I've had it before diagnosis. Anyway I've. Had radiotherapy initially on lumber and thorasic to stop. Pain and release spinal.compression I was veery in denial about diagnosis this as back in June ass in patient. 

    Since coming out my mobility got worse and very painful right femur and spasams in neck and skull so had radiotherapy on thsr. The after effects of radiotherapy to skull was horrible I had no taste buds few weeks oral thrush etc. 

    However before this I'm. On zoladex which isn't too bad getting next one next Thursday. Lethzole which is okay but serious case of dry mouth hense up this time and back agony. I was on the one beginning with p however I got very sore lips. Mouth so oncologist took. Me. Off it she asked if I wanted it to back on it two months ago but as what happened before was put off and snenddkfnmknd as csncer markers gone down. I'm also on deamasub or however u spell it monthly though been diagnosed since June I've only had one injection and this was due to the fact first she wanted me have well. Month and get used to zoladex etc then my calcium was low so given calcium d3 so then eventually got injection two months later then this month as I September calcium too low. Again to have it but she wasn't worried however I had had sickness bug off food etc so wasn't having much dairy etc 

    Anyway you are never alone you got us though I'm. Late. To the party getting diagnosed is very surreal and I didn't realise month down line when on various sites about it only being treatable not curable its lot. Take in tbh 

    Love and hugs to you all 

    Xxx

  • Hi Cazzy

    Welcome and sorry to learn of you your diagnosis. I felt like I had been sucker punched when I got mine so I do really know how that one is. I cannot relate to the side effects of your Radiotherapy as this has not been offered to me but there are plenty of fellow members who have and may be able to offer their support.

    I am currently on Letersole and Palbociclib (oral chemo) with monthly bone juice infusions. I was started on Ribociclib but my bloods were all over the place and I had to have a 7 week break before changing treatment.

    It seems like you are having a bit of a hard time what with the low calcium and sickness bug.  Please keep in mind that although we are not curable (at the moment) it is treatable. Keep talking to you Onc they need to find the right treatment that works for you.

    I have good days and days of terrible sadness but am getting through with the support around me and this site as well. 

    This room can at time be a little quite so I sometimes also use the secondary breast cancer group as well. 

    Take care my fellow traveller

    Lyn

    x

  • Hi Cazzy, sorry to hear you are feeling rough. I think it's a hard one to realize that it is not curable but just treatable, but I was thinking the way you are and if it hadn't been for this site and reading other ladies experiences I too would be very heavy and gravely upset. I have been on Letrozole and have been waiting since May to start treatment for my secondary breast cancer. I have had to have teeth out for one drug called Zometa (which I believe is a bone strengthening drug). And also the Chemo they are going to put me on is called CDK4/6.  This is subject to my outcome of the PET scan I had last week.Also I have Rheumatoid arthritis, and also amongst all this I have had to have 2 stents put in !! I also am panicking like all of us with this awful disease as to whether there is  more bad news to put up with. I am also taking CBD oil .  I hope you start feeling better soon . Always available for a chat as it is good to talk to others who are in the same boat. Xx

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