Scan results : I had my quarterly ct... - SHARE Metastatic ...

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Scan results

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I had my quarterly ct scan a week ago and have been on pins and needles ever since. For the first time I had a bad feeling and I was right šŸ˜ž. While no organs are involved which is good news, two of the Mets on my spine have grown and I have six fractures in my lower back. That would explain the extra pain. My oncologist is sending me for a radiation referral, hoping they can help with the pain and stop the progression. It seems this may be the end of the Ibrance for me with no other option than chemotherapy. Itā€™s been two years two the day since I found out I had cancer. I guess I had two years without progression and if they can contain the bigger Mets maybe I can hold of on chemo. My depression has been bad this past week due to shorter days, I really need sunlight. Now I have to tell my husband when he gets home and figure out wether to tell my kids now or after Xmas. They are both in their twenties but do I want to drag them down over the holidays?

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Thanks for the advice. I did tell my kids right away when I was diagnosed along with my sister and mother. A couple of close friends were told but I was several months into treatment before I told anybody else. I hope the radiation can stop it so I can avoid chemo for a little while longer.

Dear Sarcie: So sorry to hear the news! Praying for options that work for you ā¤ļøšŸ™ā¤ļø. Have you considered SAD light therapy. Hereā€™s an article from Mayo Clinic: mayoclinic.org/diseases-con...

in reply to hopenowandtomorrow

Thank you. I had one years ago and gave it to someone. I may have to get another one to use.

Barbteeth profile image
Barbteeth

Hi Sarcie

I too have a new met in my liver and also in sternum which I found out yesterday when I went for my pet scan results

Iā€™m having SABR to both in the new year and hopefully can stay on Ibrance and letrazole for a bit longer

I cried when I woke up this morning and on and off all day...itā€™s so disheartening

Iā€™ve told my girls..27 and 31 as they knew I had had a scan and I cannot lie to them

All the best to you

Love Barb xx

in reply to Barbteeth

Iā€™m sorry you have had the same results. It sucks big time especially this time of year. I have told my husband and daughter and best friend. Iā€™m just waiting for my son to get off work before I tell him. Please keep me up to date on how your radiation goes. I had a few good cries today but Iā€™m settling some and trying to forget about it which is easier said than done.

nstonerocks profile image
nstonerocks in reply to Barbteeth

Barb

Iā€™m sorry for this news. Iā€™m going thru a similar thing right now and I know how crushingly hard this is. I also know you too will do what you have to do and thereā€™s an excellent chance the treatment will work. The hardest part for me is constantly waiting for the next shoe to drop. It can really suck the life and hope out of you. Letā€™s just stubbornly get thru this and plan on having better news to share by Spring. Thinking of you

Barbteeth profile image
Barbteeth in reply to nstonerocks

Oh Nancy itā€™s so disheartening...I know youā€™ve struggled valiantly through your latest treatment and as you said...itā€™s the thought of what next....when and where ....I just feel like I can never ever relax feel happy or look forward to things with this hanging over me constantly

I almost refused the treatment but I didnā€™t...however there will be a time when I know I will...

I was very miserable yesterday but had to go and get Christmas cards and a few bits...anyway I called in to a cafe for a drink and sandwich and while I was waiting for my order great big tears splashed down on the table and I just cried...embarrassing but doubt anyone saw...

Anyway Iā€™m going to drag myself off to yoga this morning ....the weather is horrible here so it will give me something to focus on

Love Barb xx

nstonerocks profile image
nstonerocks in reply to Barbteeth

Barb,

First, I'm anything but valiant. Stubborn, yes. Valiant, hell no. I've turned in to quite a simpering whimp, but I exhaust myself with this after a while. As my therapist said, "you go off and lick your wounds, and then you come back and head into the fire." We both have too much quality of life, despite this nasty disease, to even think about when we are going to refuse treatment. For now, treatment is a fact of our lives. I've had to have quite a talk with myself about this and am working to accept this is my life with cancer. And it's the only life I have. Good you dragged yourself to yoga. I did that a few weeks ago, it changed my day! How did your class go? Sunday I am getting Reiki'd. There is nothing about Reiki that seems logical to me, but I have had it twice, and both times I felt renewed. I'm going to try anything that isn't toxic that makes me feel better. Well, except for chemo and radiation. Plenty toxic but hopefully cancer hates it more than I do. I consider you my sister in this "push" to get back to stable. Let's go! Is your Christmas tree up? I'm going to have my husband and son, both Jewish, put the tree up and drag out the ornaments. We have a beautiful Menorah we also light. I really need the lights this year.

Barbteeth profile image
Barbteeth in reply to nstonerocks

Hi Nancy

Yes my tree is up only because I had a party last Saturday ( itā€™s called a fuddle in Nottingham where everyone brings something).. so I just bought Prosecco and did a cheeseboard...however I really wanted a real tree this year but miserable hubby was moaning and saying it would be messy expensive blah blah so I just dragged down the fake one and chucked baubles on it but wasnā€™t in the mood...it looks nice though

Last year I was very emotional about Christmas and thought it would be my last...but here I am !!! but still thinking the same ...having my girls and hubbys for the festivities...Miranda and Ben will stay for a while as they live in London

Mirandaā€™s a bit of a control freak so she can do it all...Iā€™m not much of a cook but will do potato dauphinois then just drink gin with vanessa ...sheā€™s very like me!!!

Thereā€™s a reiki practitioner where I go for acupuncture and Iā€™ve pondered about trying this...I will now youā€™ve reminded me...anything to balance my mood will be a bonus

Yoga was good today although some of the sitting forward bends hurt so I just miss those out...the other postures I find easy as Iā€™ve done yoga for years and am fairly supple...Iā€™ve started swimming which helps with pain and I enjoy that...not riding much as this time of year Bugsy can be a handful...we clip off their coats and put on rugs so it makes them a bit excitable when theyā€™re removed....heā€™s not naughty and I wouldnā€™t be bothered normally but Iā€™m a bit wary of coming off and breaking bones

I find Christmas a bit too emotional...everyone happy etc etc and I feel left out of that...many years ago I was a telephone Samaritan and the calls increased a lot over the festive season as it can be a very unhappy time for some people...I understand that now!!

Going back to the radiotherapy...Iā€™ve been warned that I may have swallowing problems afterwards and I know you struggled with this so I dread it but itā€™s not for ever so Iā€™ll just have to put up and shut up...Iā€™m glad youā€™re starting to improve though...I guess itā€™s good for the figure if nothing else!!

Have you had to change your meds?.. I canā€™t remember what you said

All the best

Barb xx

nstonerocks profile image
nstonerocks in reply to Barbteeth

Wonā€™t know about maintenance meds for a while. My swallowing is a lot better but no miraculous recovery yet. I have to laugh how you say youā€™re no cook but youā€™ll do potatoes dauphinois. Sounds quite fancy. And if you can chuck baubles at your tree and pull it off, youā€™re not half bad. Yes the holidays can be emotional land mines. Youā€™ve got your daughters and the gin. šŸŽ„

Barbteeth profile image
Barbteeth in reply to nstonerocks

The potato thing is really easy!!

When I was young and we used to entertain...I had three things I could pull off...chicken fricassee...beef stroganoff or spaghetti bolognaise followed by a bought pudding!!!

Iā€™m sorry the swallowing hasnā€™t totally improved...but at least itā€™s going in the right direction

What a life

Barb xx

nstonerocks profile image
nstonerocks in reply to Barbteeth

You said it sister!

in reply to Barbteeth

Cry all you want. I did enough of that yesterday.

Ycats277 profile image
Ycats277 in reply to

I have non stop this entire week . ā¤ļøsoft hugs šŸ¤— to you from someone who also needs one . Xx

in reply to Ycats277

Sending you a big hug šŸ¤—

in reply to Barbteeth

You go ahead and cry Barb. It is necessary and even cathartic some times. I share your frustration and I am very sorry. I am sending you peaceful thoughts to help ease your anguish. We are here for you.

Barbteeth profile image
Barbteeth in reply to

Thank you for your lovely message...crying does help Iā€™m sure but embarrassing sometimes...Iā€™m not good at putting on a brave face recently

Barb xx

Ycats277 profile image
Ycats277 in reply to Barbteeth

Me either , crying in public must really look stupid but I canā€™t control it . It so hard , I am with you šŸ˜¢

in reply to Barbteeth

Donā€™t let being human and showing fear and tears make you feel embarrassed please. None of us are stoic Vikings. We are harder on ourselves than we should be. Every day you get up and out of bed and push on. That is strength every single darn day. Now youā€™ve had a disappointing setback. . It would be unnatural if you did not feel low. The fact that you were able to get your tree out and decorated speaks to your perseverance. I respect that it is hard for you to look at festive lights and wonder about next holidays. Thatā€™s natural. Please though, focus on how you continue to endure. Think about how low you were before your daughterā€™s recent wedding. Yet you pushed on and you were able to celebrate that milestone. Perhaps thinking of that will help remind you that you are still on a journey that has miles ahead yet.

Sunnydrinking profile image
Sunnydrinking in reply to Barbteeth

Hi Barb

I so feel for you, again especially as Iā€™ve just received good news of a stable scan.

Itā€™s hard not to cry sometimes and we are all entitled to. I also cry sometimes both with sadness and joy. I feel it does somehow release a bit of tension and I feel better again in due course.

We are all living with daily challenges and I now try and take one day at a time.

I wish you well Barb, youā€™re a beautiful lady inside and out with stunning daughters who clearly love you dearly.

Thinking of you and sending you a hug šŸ¤—

Jo xx

mariootsi profile image
mariootsi in reply to Barbteeth

Oh Barb. I wish all the best to you. You have had a hard time lately!

Barbteeth profile image
Barbteeth in reply to mariootsi

Yes itā€™s horrid

Thanks for your support and all the ladies on here who pick me up when Iā€™m down

Barb xx

Arisgram profile image
Arisgram in reply to Barbteeth

Barb, I'm so sorry for the bad result. I can certainly understand your down mood. I'm unable to express myself as well as others as I'm afraid the floodgates will open on me. (I guess it's the season or the recent progression.) But, know I'm inspired by you and the others who face your setbacks and share so freely. Thank you and hoping you find joy in the season.

Andi

Thanks for the link. So many to decide from so this helps.

Sarcie,

I'm so sorry about your news...Gosh...this disease is just awful. I'll be thinking of you and sending good vibes/energy as you go through your treatment (and these are not just words...).

It sounds like you've decided to tell your family, which I imagine will help you get through the holidays vs. keeping this from your children and close friends. These are certainly difficult conversations to have...I'm actually surprised (now that I think about it...that we don't see more on this site re: how to share the info...I'm not expert, for sure, generally opting for the clumsy blurting out vs. measured communications....I'm sure you did better!

I'm glad you're going to be getting the rads and will have the fractures and pain dealt with...And, while we all dread chemo, I'm sure, I would imagine that these are "bigger guns", just more unpleasant, so held off until the easier treatments stop working? I think I've read accounts on this site from women who have responded very well to chemo after moving on from the "softer" treatments? I hope the same for you...

I hope you are able to enjoy the holidays, surrounded and supported by some of the people who love you!

Take care,

Lynn

in reply to

Thank you. I told my husband when he got home and my daughter after supper. I told my sons girlfriend so when he got home from work she had him call me. I think he was the hardest as he shows his emotions like me. I tried to give them the facts and be optimistic. Trying to stay positive helps us all. As my best friend said tonight, not only did you have to hear this bad news but then you had to tell the ones you love. Not fair but neither is cancer. Iā€™m lucky to have my family and my best friend. Again, thank you for your good vibes and kind words.

Iā€™m very sorry. Itā€™s dreadful to hear such news. It is a lot to absorb for you. Please, take the time you yourself need to absorb all of this, and only then decide who to inform and how.

As odd as this may sound, I found that it helped me when I was first diagnosed with MBC to remind myself I would not die within a week. Somehow that helped me overcome my deep sadness and anxiety. Yes, progression is lousy. But you are still on a journey and no one has said something awful is imminent.

I swear that a big reason my father lived to be 89 is because he truly believed it when he would say ā€œletā€™s cross that bridge when we get to it.ā€ Talk to your doctors. Come up with your treatment plan. Then, try to avoid ā€œwhat ifā€ since that is too speculative still. I canā€™t help but think that the ā€œone day at a timeā€ mantra works for so many folks struggling with addiction. It is probably good for us too.

Having said all this, Iā€™d be weeping in your shoes. I just hope that among all the noise in your head right now, the words of your fellow sister warriors are louder. Hang in there. We are here for you.

in reply to

Thank you ā¤ļø. Having the support here and knowing that you all understand really helped me today. As I told my son, there are others that have it worse and Iā€™m lucky it is only in my bones. We have to find the good and once I had a couple of good cries and I got my self together. It was harder telling my kids then finding out myself.

Andersl profile image
Andersl

The chemo eradicated the mets on my spine so whilst its not so good news about the mets, theres a good chance chemo will be effective.

My advice on telling your offspring is to leave it to the new year if you can. Enjoy Xmas :)

I hope all goes well x

in reply to Andersl

Thank you for the encouraging news. I hope this works for me also.

hdhonda profile image
hdhonda

Sarcie and Barb,

I am so sorry you have both had progression. It is the news that we all dread but will face one day. I think I was better prepared in February 2017 when I learned that I was stage 4 than I am today. I think you will feel better when you start the new fight. Hugs and best wishes in the meantime. Blessings Hannah

in reply to hdhonda

Thanks Hannah. ā¤ļø

Sunnydrinking profile image
Sunnydrinking

Hi Sarcie

Iā€™m really sorry to hear your news, especially as Iā€™ve just received the good news of a stable scan.

It certainly sounds like they have treatment options and I hope they sort a plan out for you ASAP. Thinking of you and sending you a hug šŸ¤—

I vary with sharing things with family and friends. In the past Iā€™ve probably shared too much with too many.

It became clear to me that some of my friends, understandably, didnā€™t understand and I may have ā€œbaffled them with scienceā€.

Also, some friends just donā€™t get that Iā€™m not on chemo yet so have I really got MBC .... I give up trying to explain.

I wish you well - please keep us updated.

Jo xx

in reply to Sunnydrinking

Iā€™m excited for you to have gotten good news. Always celebrate the good news. I did tell my husband and kids and best friend. Today I told my sister and my sister in law. Cheated and texted the last two.

hdhonda profile image
hdhonda in reply to Sunnydrinking

Sunny,

My feelings exactly. Folks think I am cured because they see me out and about. They don't know I have to be careful not to overdo and that I can't make multiple plans. I have to space things so that I get plenty of down time.

Blessings Hannah

in reply to hdhonda

Isnā€™t it so frustrating when they say, but you look so good. At first I said thank you as I didnā€™t know what to say, now I want to say ā€œitā€™s good I donā€™t look like I feelā€. But then people would say I was mean. I think they forget we are battling MBC. If you arenā€™t thin or bald they think you are cured šŸ˜”

Barbteeth profile image
Barbteeth

Hi Sandra

I think the met in my sternum was always there but the pet scan shows activity...I suppose ct scans donā€™t do that.....I have numerous widespread bone mets

Iā€™ll be having a double whammy of SABR in the new year

I almost felt like saying...stuff it Iā€™ve had enough but I didnā€™t....really fed up though as I was feeling better recently and doing more...now itā€™s back to feeling hideous again

Barb xx

Teddielottie profile image
Teddielottie

Thinking of you both Sarcie and Barb... awful time to get news of progression , but you are both in good hands and will get through it ! Keep going and keep your minds busy ! We will all go through this at some point and just have to help each other through difficult times . Much love ! xx

in reply to Teddielottie

Thank you for the support.

Godbeforme profile image
Godbeforme

Sending love and prayers your way and so sorry to hear you're going through it! May tomorrow be a brighter day for you. When I am feeling that great sadness and feeling the void, I don't know what else to call that feeling so I'll use void ... empty ... dark ... I say the Lord's prayer over and over again to myself until that feeling leaves me. I have been doing this since I was a child and Jesus has never failed to lift that spirit of despair off of me. The Lord's prayer is powerful, that's why Jesus gave it to us. God bless you and heal us all in Jesus name, amen. Oh, and I don't ALWAYS remember to do this, sometimes I just cry all day. I blame the lack of estrogen, I sure miss my estrogen!

nstonerocks profile image
nstonerocks in reply to Godbeforme

I dunno. Estrogen is my enemy these days. At 66 whoā€™d think I still had any?

in reply to nstonerocks

I hear you. I would have assumed mine was all gone but apparently itā€™s till there. šŸ˜ž

Ycats277 profile image
Ycats277 in reply to nstonerocks

My gyno told me that all woman have it until 65-66 . Iā€™m 58 :( hope I make it šŸ˜³

in reply to Ycats277

Iā€™m 55 so a ways to go. We need more than Letrozole to block it

in reply to Godbeforme

Thank you. I used to say The Lords Prayer every night when I had nightmares. It used to calm me. Some times crying is good for the soul.

mariootsi profile image
mariootsi

I'm so sorry to hear your news, but sounds like your onc has a plan. Hopefully, it will kill the pain and get rid of that damn cancer!

Love and hugs

in reply to mariootsi

Thank you. Iā€™m going to think that too.

Barbteeth profile image
Barbteeth

Sandra youā€™re so right

I was peering down the rat hole yesterday...but not today

Thanks

Barb xx

Ycats277 profile image
Ycats277

I had my pet scan this morning, I have cried non stop in public and home for a week . PLEASE donā€™t refuse next line of therapy because it could be the one that works the best so far and something else can come along while in treatment . I am no one to talk , I am a weeping willow but I do know one thing , the vibes I get from you tell me there is much good life left and lots of love around you . Please donā€™t give up .soft hugs šŸ¤— to you , , Xxoo

Stacy

in reply to Ycats277

Thank you for you support. I got my appointment date for my initial meeting with the radiation oncologist. They said they will also do the markers on my body for the actual radiation that day, assuming he says itā€™s a go.

in reply to Ycats277

Please let us know what your scan results are. This group gives such amazing support. All of you have helped me centre myself and prepare for the radiation

Arisgram profile image
Arisgram

Oh Sarcie. I'm so sorry. Sending you good thoughts and warm hugs.

Andi

viennagirl profile image
viennagirl

Go onto a You tube site that talks about holistic ways to treat cancer. Search for "What exactly would you do if you were told you had cancer". It will take you to a conference hosted by Hippocrates. One of the doctors - Pam Popper - is my favourite cancer doctor. Some of their suggestions could be included in your chemotherapy treatments. I think you should share with your children before Xmas. Crying and hugging together will help you all face the future. Then just enjoy each other and have a wonderful holiday season.

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