Bone mets - please join in

[Carolyn52]

Well ladies ..I did it ..got up at silly o'clock for Next sale ..it always used to be my thing ( they always joked about burying me in next sale queue !!) Before this cancer lark hit me 2 years ago, I just wanted to see if I still had the gusto to do it! Proud of myself for disturbing hubby oops (and neighbours as I leaned on the car horn by mistake)
There was a lady there ..still in her pj's and hair curlers. .standards please ladies !
Hugs xxxx

[jazmia]

Hi funnyface

please do not put yourself down by saaying you are too soft ,as that is not the case ,the way i read it is you are a wonderful caring person and there are not many around i can tell you,so please go away and enjoy your break ,dont even think about this evil parasite that is taking over ,and i am sure you will find your time and effort worthwhile in some other job which i hope will come to you soon .

i do know exactly how you feel as have gone through same myself .

take care 

renee

[funnyface]

Carolyn, We both get disability which is bc we are disabled and not old enough for social security. Once you reach full retirement age the disability payment then becomes social security. You still get the same amount you just don't have to prove anymore that you are disabled. Hubby gets a small pension. The carpenter union punishes you for retiring early. They keep 60 % of your pension every month for life 30% for retiring early and 30% for not having worked for two years before retiring. The reason he wasn't working was bc the economy had clashed and there was hardly any work. Many if the carpenter had lost their homes. I was a stay a t home mom and then a school bus driver. No pension.  Luckily for Ross he cleans the center while it is closed. He is the only one there and doesn't have to deal with her BS! I am going to try and relax!  I guess my heart is just too soft! FF

[Carolyn52]

Hello ff
OMG. .that is horrible and I know you love the job too ..hope you get another one soon where they appreciate you and hubby ...I expect you are in between age that you don't get your state pension yet ? In the UK they move the age gatepost all the time ..mine was at 62 ..but some ladies have to be 66 ..not sure what US offers for you ..pension wise

It's miserable for you as you are living with cancer and side effects. .the stress is not good but neither is having no income. .
I worried when we retired how we would survive on less money but it's surprising how much I saved by not buying office suits, buying lunch daily, petrol and buying ready meals and convenience foods.
Anyway. .forget about it and enjoy your weekend.
Xxxx

[funnyface]

Hi Girls! Sorry I've been quiet.Life at work has been miserale. They fired our director of the senior center. He was a wonderful person but terrible at the finances. This is a non profit and he wasn't getting the funds. Move on new director! She came in told me my work was preschool, that I don't do enough work and asked if I was even capable of looking anything up on line!! She also said she didn't understand the Circle of Care program I was running and was closing it. I tried to explain the program to her and she said she didn't care. I explained to her that the things that looked pre-school to her was the best work of the dementia clients and they were proud if their work. That they had as much right to display their work as the seniors who do fine art work. She said NO! She said it gives the senior center a bad reputation. The next day when I came in she had ripped down their stuff and had thrown it away! As far as not doing enough work I was furious! The day she said this to me I had done a fund raiser for the center. I shopped the day before (on my day off) for supplies. Hubby works at the center too. He is the janitor. He shopped with me.Donating his time too! Then we sliced up all the onions and tomatoes for the hoagies (you probably call them subs). We got the production line ready fir the next day. Hubby got up early and drove to a bakery in the city to get good rolls. I got up early and went the opposite direction to get potato chips. Then we made the hoagies. Then I worked my shift. I spent 8 hours of volunter time plus worked my shift. Ross did the same! We made $500 dollars for the center! Mind you she didn't show up to help. She also said that if the seniors don't like her changes they can leave. It is their center not hers. She keeps throwing things away without asking what they are used for. We have a l day in a motorized wheel chair. She said she is going to tell her she needs a a smaller chair! She set up a little table inside the doorway  and stated she doesn't care if they trip over it and fall. They are seniors and will fall anyways  she says! We have a table of seniors who don't join many activities, but are happy chatting. They come their to socialize. This is the purpose if the center. It is so they are not home alone! She said she plans on getting  rid of them bc they make the place look bad with their inactivity. She speaks highly to our board of her love for the seniors.How she wants to make an amazing place for them. If the circle of care program failed, I was to be made director of programs. This was the old executive director's plan. She knowsew this and discussed it with me. On Monday she brought in a new lady and introduced her to me first telling me this lady was director of programs.She has succeeded to make me feel like a nobody! She is nothing but nasty to me. Other employees have said they can't believe how she threats me. I even had presented her with ideas for a diversity program I created, a free senior bullying program I found, a community give back program (making and filling stockings to be given out at a community Christmas dinner), and a community outreach program to put our more active seniors in the public eye. She said, no to all of them. Then that's when she told me I don't do enough work.I certainly don't know what I should be doing!! I have applied for two jobs. I'm positive I got the one. Sure hope so. I think she is going to fire me and I don't deservd it. I have volunteered fir the center for 21 years. I have worked there 4 years. The center and seniors are a big part of my heart! The way she is read ing the place apart is ripping me apart. I desperately need out, but need my money too. Please cross your fingers for me. I've been crying every day!  I won't be in for a couple days, going camping! No internet there!

[rosie53]

Hi Jellytot, what strength of co-codamol are you taking? Do you know there are 3 strengths of it?
8/500mg
15/500mg
30/500mg
I'm the same if I take 30/500 I'm fit for nothing, so I either take 15/500 or 8/500 along with a naproxen 500mg.
Hope this helps, hugs Janette xx

[jellytot83]

Thank you Renee x

[jazmia]

Hi jellytot

would your doctor prescribel low dose morphine ,as i had that and did not make me sleepy ,about the only thing that worked but am off it now as can become addictive,there is also tramadol but that effects people differently .dont know if any of this helps but hope so

take care 

Renee

[jellytot83]

Thank you Stripey.

Suze - Brilliant news! Luck, love and life to you xx

Can anyone recommend a good painkiller that isn't drowsy. I find co-codamol is the only thing that really gets the pain under control but it makes me very sleepy. I really want to go back to work and I can't unless the pain is under control and I'm not asleep!

xx

[jazmia]

Hi suez,

Great news ,wish we could get more like this daily ,

Go ahead and enjoy life ,we aree wishing you all the best for the future.

Renee

[rosie53]

Suez, that it amazing news, sooooo happy for you.
Wishing you all the best for the future!
Hugs Janette xxx

[Carolyn52]

Hello suze
That's great news and it's been nice having you here but go off now and enjoy life xxxxxx

[Hayeswen]

Fanatastic news. If this has taught us all anything it is to enjoy what we have. Wishing you all the very best  Wendy x

[funnyface]

Suze, Estatic for you!!FF

[bonariensis]

Fantastic Suze xx

[Suze57]

This is just to say Goodbye and to wish you all well. 

I've had confirmation now that the lesions on my spine are not cancer and no longer have to take letrozole,

Keep fighting this dreadful disease ladies and thank you for all your support. Hugs Sue x

[Stripey]

Jellytot! I haven't been on the forum for ages but just dropped in today and saw your question about an oophorectomy.
I had one last year. It was very easy compared to lots of the other things I'd had and you've probably had.
I had 3 incisions, was in and out in a day and exactly a week after the op I travelled by train to my mindfulness class and had lunch out (and I'm a wimp!!).
There were just 3 little plasters covering the incision areas (one was in my belly button!).
I found the referred pain a bit uncomfortable... It was sore in my back/shoulder a bit and I felt full of wind (from them puffing air in so they can see what they're doing). I set up camp in my living room, right next to our kitchen and loo and was a bit couch bound for a few days. But it really wasn't that bad.
If you'd like to know anything else please give me a shout. Xxx

[jellytot83]

Chrissy that's great news! What a horrible few days you must have had xx

[crissy]

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

[Suze57]

Thank you Wendy. Still confused but oncologists secretary has phoned today to say I'm going to receive a letter soon. Xx

[Hayeswen]

Suze

I am keeping my fingers crossed that your ray of hope becomes reality

Wendy

[joellek]

hi all,

everything has been a mess!
first of all the pain has been bad really bad in her tibia! ive never heard my mom say shes in pain she cries and can barely walk sometimes!

second erubilin and immuno were suppose to start yesterday, but the clinical trial nurse forgot to inform her she needed to be off the arimedex 2 weeks ago so it doesnt interfere with the immunotherapy. so treatment got postponed although we found out yesterday the computer did not choose her to be one to take erubilin and immuno therapy together. but in order to still have the option to take immuno after 9 weeks incase the erubilin doesnt work she still needs to have stopped the arimedex for at least 2 weeks before.

so as for treatment were not sure if this is
good, if this is bad. im still far and shes just sooo sad, sooo in pain. erubilin is set to start on the 21st. thankfully ill be there. the onc believes the erubilin should be enough for the pain and she wont need radiation....but im not so sure because its causing her so much pain! the oxycodone and ibprofeun together arent helping!

also found out the lesion on the lining of her lung is 6.3 cm that also scared us to death....i dont know what happening and why its all so confusing this time....


joelle praying for a cure xoxo

[jazmia]

Hi funny face and carolyn 

i arrived home about 5pm and yes completely shattered but hey if it does some good i wont complain ,i do have a hospital about 20 minutes away but they can  not give perjeta for some reason and i do not have chemo as they pulled me out of that as had no quality of life with it so now i am on herceptin and perjeta,and always a wait ,but today was even worse as the 9am appointments did not get in until 11 30 so right behind all day ,never mind i will survive ,for all my hair is not,, as coming out badly ,i do  have a wig but feel uncomfortable in it ,guessing i will have to get used to it.

bye for now 

renee

[jazmia]

HI 

F

[Suze57]

Good evening ladies. I've not been on for a while because had confusing information from different consultants. Still not had biopsy because it's too small and the neurologist feels that its atypical haemangiomas, which are benign tumours. The oncologist said several weeks ago that she wasn't sure whether it was cancer or possibly a lesion that has previously healed. So, I'm having an MRI after three months to check what's happening. I've been following all your news and think you're all amazing! Also, incredibly busy because my co teacher is off and preparing to pass on old class and find out about new. 

I will let you know what happens next but meantime, hugs and best wishes to everyone. Xx

[Carolyn52]

Pmol
I live in fear of letrozole stopping working too , it has a lot of work to do!! I have always lost a lot of hair in the 20 months I have taken it ..and realised that the last 6 weeks it stopped. .but in the shower this morning ..hair thinning again so fingers crossed it's still doing something ? Maybe I have false hope ..oncologist says on average it works 3 months to 3 years ..everyone is different.
Xxx

[Carolyn52]

Hiya ff
Hope u enjoyed your weekend away ..it was a hot one here ..I huffed and puffed and was a real sweaty Betty! !!
Hello Renee
How are you now ..assuming a long day at hospital and you are resting now .
Hugs xxxx

[funnyface]

Renee, I'm sorry you have to go through a lot just to arrive at chemo. You must be exhausted and fed up before you even start. I hope they treat you well. It sounds like a long day. FF

[funnyface]

 PMOL, That must be so frustrrting to find out the drug didn't help at all! Best w I she's with exemestane. I'm taking it along with evermolimus. FF

[jellytot83]

Yup PMOL, looks like it will be on July 17th xx

[rosie53]

Pmol, sorry to hear letrozole didn't work for you, good luck with your new treatment plan though.
Hugs Janette xx

[Carolyn52]

Hello Renee
You must be physic. ..I was just thinking of you as we haven't heard from you the weekend.
Best of luck with the treatment ..phew sounds like a all day thing with travelling too but enjoy a few cuppas and some people watching to fill in the day.
Phew it's still hot here but mustn't complain as before we know it ..it will be (swear word coming up) .Xmas ..aah.
Hugs xxx

[jazmia]

hello pmol,so sorry thee treatment has not worked but hoping the next one wwill be better for you.

carolyn ,hi just off to have my three weekly treatment ,i am just waitng for the ambulance,then the hour long journey which i hate but needs must ,,,hope you are ok and enjoying the lovely weather .

Renee.

[Carolyn52]

Hello pmol
So sorry the letrozole magic hasent worked ..hopefully exmestance will be better
Hugs xxx

[PMOL]

Not yet... my onc nurse was BRILLIANT as she pushed for it.   Onc wanted to speak with radiologist first before making the decision and she said to request it anyway and if we then need to cancel it then so be it but at least this way it's on the pipeline.  Have you had a date for your op?? Xxxx

[jellytot83]

Big hugs PMOL. Have they given you the MRI date yet? xx

[PMOL]

Hi girls - sorry I haven't been in touch... had oncologist thursday and they said the letrozole hasnt't worked 😞 Tumors have grown and spread and there is a question mark on my liver so will have to have an MRI to investigate further.  If they think it's cancer then I'll have to have chemo. Don't know what the treatment plan would be at all... just trying to take it one day at a time... in the meantime I have started another tablet (exemestane) in the meantime 

just hoping that this works...

[rosie53]

Hi Belinda, totally understand you wanting a "forum break" I do this from time to time. Sometimes you just need to step back and have some time out.
Take care hugs Janette xxx

[jellytot83]

Hi Chrissy,

I was only diagnosed 7 weeks ago so I don't have any advice but am sending hugs

xxx

[jellytot83]

Oophorectomy advice please! Looks like mine's going ahead this week. How long did you take to recover from the op and what are the side effects like? xx

[crissy]

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

[jazmia]

hi ramade,

you can have an M R I scan for the brain ,i know as someone has had one i am in contact with ,but also my breast cancer has gone to my lungs and liver ,but not the brain or bones ,so am hoping it does not spread further

take care renee

[ramade]

Joellek, this is interesting because breast cancer tends to go to bones and brain first but I don't anyone who has brain scanned, perhaps it's dangerous, can anyone enlighten us?

[joellek]

hi ladies,

i am always bombarding you questions...not sure why but every few days we have a new pain. shes having really bad headaches? should we be concerned about brain mets? or could it be the lesion on her forehead on the bone?

she had zometa this past monday and she starts erubilin on monday. does the pain eventually lessen?

thanks


joelle praying for a cure xoxo

[Carolyn52]

Hello Catherine
Welcome to our world. .I'm sure your advice will help a lot of ladies here ..lucky enough I only had a lumpectomy so don't suffer with the booby problem.
Thank you for joining us.
Xxx

[Carolyn52]

Hello ff
Hope the sea air at the weekend helps your rash but I think the hot weather doesn't help our skin either soooo have a lovely break ..xxx

[Cdudley1966]

Hi my names catherine

i too struggled with the prosthesis I found  them quite heavy and they weight my bra down a lot. I find the softie that the breast care nurses give you miles better, you can take some of the stuffing out of them too, to make them the right size for you. Also I find vest tops very useful for lower cut tops....H&M do longer versions too in basic colours. Hope my advice is useful to you.

kind regards

catherine 😘

[jazmia]

Enjoy your break funnyface,

Renee

[funnyface]

Well went to the oncologist. We decided today that the rash could be from the med or maybe my body spray. That my skin could be sensitive to the drug. I was to stop the body spray for a week to 10 days and let her know how I was. If I still have the rash then she would lower the dose. Well that has all changed since this morning. Blood work has come back that I'm having a true allergic reaction to something. This means that it is not the normal rash caused by afinitor, but I could still be allergic to it. She wants me to take benadryl for now. If I get worse then possibly steroids. She isn't worried about the post nasal drip said it could be starting to show that the drug isn't working or from the drug. Scan Aug 1st results Aug  3rd.  Leaving tomorrow after work for the beach. Will be back Monday! Have a good weekend. FF

[funnyface]

Talented lot we are Barton and Carolyn!