Scan results: Hi ladies Had my scan... - SHARE Metastatic ...

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Scan results

Crazydentist
Crazydentist

Hi ladies

Had my scan results today and there is some sclerosis of my bones which oncologist seems pleased about

The fractured T5 has collapsed and she recommends having cement injection ..kyphoplasty but I’m still concerned about small risk of paralysis..just don’t feel lucky!!

My neutrophils down so couldn’t go back on Ibrance 100mg..more bloods next week to see if they recover

Calcium ok so I had my denosemab injection

Tumour markers have dropped which is good..the whole thing just gets me down..I shouldn’t moan as there are some positives here..I just want the old me back and it’ll never happen!!

Off to have lunch with some pals..think will have a glass of wine!!

Sorry for rant

Barb

Xx

32 Replies

Hi Crazydentist,

Rant away, you need to let it out and this is a good place to do it :) Sorry you're feeling low and about the T5 collapsing. Perhaps do a little research on the cementing procedure,? With caution and a grain of salt whenever looking online! It is probably a safe procedure and seems that that vertebra needs to be stabilized.

You have the positive of the tumor markers and the rest will rebound. Hang in there sister!

Crazydentist
Crazydentist in reply to 13plus

Hi

I think you’re correct about the vertebrae needing stabilisation

I’m going to have a consultation and decide soon as I’m fed up of pain

Thank you for your kind words

Love xx

13plus
13plus in reply to Crazydentist

You're welcome! Keep us posted on what the doc says? It would be interesting to hear.

I too want the old me back! But we are all coping with the "new normal" and I'd say lunch with friends and a glass of wine is a great way to cope. Never feel bad about ranting, we've got a lot to rant about but at least we're here and doing our best.

Strength, healing and humor to you,

Becky

Hi Becky

Yes I have lots of chums..mostly bonkers about horses so we have a lot in common..they have been so sweet to me

We were all supposed to be going on a riding holiday with our horses this week but me with mbc another fell of her horse last week and broke her wrist another’s horse is lame!!.. wasn’t meant to be so we had a prossecco tea this afternoon instead

You ladies must think I drink all the time..not true

Barb xx

blms
blms in reply to Crazydentist

HYSTERICAL!! WE ALL WANT TO BECOME ALCOHOLICS!!

My husband had kyphoplasty 4 years ago (fell off a ladder, not cancer) and it worked like a charm. You should have no problems. Enjoy your friends and wine!

Crazydentist
Crazydentist in reply to diamags

Hi

Oh thank you for that reassurance..I’m a natural worrier I’m afraid and having this disease has just made me worse

I’m going to have a consultation about this procedure and probably go for it as fed up of pain

Barb xx

Here's something to think about when your rant subsides followed by tears.

Maybe there is a new version of you just waiting for you to embrace.

Maybe a new purpose in this lifetime is quietly calling thru your MBC.

Maybe it involves some new capacity you never thought about with your passion, experience, knowledge and love of horses.

There is some strong undeniable medicine and healing one can receive from just being in the presence of horses.

I feel it's worth considering, since there's a good chance a slight shift in perspective may turn your whole life around revealing a wonderful new purpose.

Heck, go hug your horse Barb and see what happens, I could be completely off base.

Crazydentist
Crazydentist in reply to JoyBe

Hi

You are so right about the horse therapy..they actually can read your facial expressions as dogs can.. he definitely knows I’m not feeling very good some days and nuzzles and whinnies more

He’s being gentle as well..no silly spooking or barging me in the stable

I do give him hugs and kisses!!

All the best to you in your journey with this disease

Barb xx

JoyBe
JoyBe in reply to Crazydentist

Hi Barb,

I would like to share my new found perspective looking at MBC as a journey of nourishing my health rather then a journey with a disease.

It makes all the difference in the world for me.

I admire your relationship with your horse and your ability to recognize his support, what a blessing ;)

Crazydentist
Crazydentist in reply to JoyBe

Hi

I like that..concentrating on nourishing your body instead of hating a diseased body.. I’m going to try and think like that

My horse is called Bugsy!!

Barb xx

Hi Barb,

That is good news about the sclerosis! I tend to find that when oncologists are pleased about something, they have reason to be! That is progress, so you deserve to celebrate.

I haven't heard of cement injections before, but if you are unsure I would research it and ask your oncologist lots of questions. I'm sure they would not recommend it if it was considered too dangerous.

You have a right to moan and get things off your chest. I feel the same about wanting the "old me" back, but if progress can be made and the disease treated, then I am happy to keep going with treatment and not give up. I hope you are feeling better about everything today!

All the best,

Sophie x

Crazydentist
Crazydentist in reply to SophSP

Hi Sophie

Thank you for your reply..I’ve decided to seek a consultation about the kyphoplasty and probably go for it as pain is making me miserable

I’m going to have B12 injections soon as my anaemia didn’t recover after the iron infusion I had..it’s all to do with the effect of the Ibrance..it’s a harsh drug but I want to be able to restart it as it does seem to be effective for lots of ladies

Hope all going well for you

Barb xx

SophSP
SophSP in reply to Crazydentist

Hi Barb,

You're welcome! I think it's a good idea to seek a consultation and to find out more about what's involved. I have heard about Ibrance. It does sound harsh. Hopefully the vitamin B12 injections will help.

I self-referred myself today so that I can get some physiotherapy. My right hip (turns out the pain originated in my L4 portion of my spine) has been giving me some trouble. My oncologist and GP thought physiotherapy might help. I am also having radiotherapy next Tuesday, and complementary therapy starting in September. Urgh! I just want to be pain-free. I am working on it!

Take care,

Sophie x

Crazydentist
Crazydentist in reply to SophSP

Hi Sophie

You’re doing the right thing in trying different therapies

I’m starting some acupuncture treatments..had first one yesterday..she thinks it will be of benefit as I have tight muscles near to the fracture area

Will see

Best of luck with your therapies.. I think it makes you feel better just doing something for yourself

Love Barb xx

SophSP
SophSP in reply to Crazydentist

Hi Barb,

Thanks! I've always tried to do the best I can with my health and now there's this illness to deal with I am trying harder to do what I can to help myself lead a normal life. I don't want to give up work, but to carry on the best I can.

All the best with your therapies too. I'm having an early night. It's been a hectic day.

Sophie 💘

Crazydentist
Crazydentist in reply to SophSP

It’s hard to give up work if you enjoy it..I was planning retirement this year anyway mainly because of back pain..which ended up as mbc!!..so I just retired earlier as I’m 64 now.. I still miss the job and especially the staff and patients . However I’m adjusting to this new life!!

Barb XX

SophSP
SophSP in reply to Crazydentist

Yes, I bet it is! I'm 39, so don't feel ready to give up work. I run my own pet sitting and dog walking business, so that keeps me very active. I've got several dog walks lined up today. I'm glad you are adjusting well.

Sophie xx

Crazydentist
Crazydentist in reply to SophSP

Hi

You are lucky to have a job that is healthy and you enjoy..don’t give it up if you feel fit...there’s nothing worse than being bored and then your mind can wander on to thinking about illness etc..better to be busy and active..I hope you do well

Barb xx

SophSP
SophSP in reply to Crazydentist

Hi Barb,

Thank you! Yes, I do enjoy my job. But it is quite hard work at times. My oncologist told me not to give it up. At the moment I am flat out, as a lot of clients are away on holiday. It's no fun that my recent busy period just happens to coincide with extra aches and pains! I have had five dog walks today, with two more left to do this afternoon. I walk for miles, so I should be in tip-top condition really. I just feel like I am a young woman in an 80-year-old's body! Hopefully I will feel better after my next two treatments (radiotherapy next Tuesday and my Zometa infusion on the 31st). Some days I can walk at a really fast pace and have lots of energy, but I think with the extra pets to care for it has just taken it out of me this week. I will have a nice relaxing soak later. Speaking of dogs, I'd better get my trainers back on and head out.

Enjoy your day,

Sophie x

CrazydentistThis is not as long winded as my last post to you. Just wanted to say you sound a wonderful,fun lady in spite of the pain. I do hope the Prosecco was well chilled.

Gigi

It was!!!

Barb x

I have a similar situation. I have collapsed vertebrae’s and fractures in L4 and 5.

At my consultation, the doctor put me on 7 weeks of physical therapy first. He said the kyphoplasty may not work because my spine is not aligned or exactly straight.

I’ve never had the B12 injections. Just started accupuncture but it’s too soon to tell. I also may have patella pain syndrome, it’s very difficult to stand after sitting for 20 mind or more. I’m currently on ibrance and falsadex which I though was just causing joint pain.

As far as the risk of the the kyphoplasty, I hear it’s low (6%) and noninvasive. Just an in office procedure.

Hang in there! I often have days like yours...

Lynn

Crazydentist
Crazydentist in reply to lynzer

Hi Lynn

I’m going to see the spine consultant again and try and get a plan..I may have left it too late for the procedure as apparently it should be done soon after fracture..however mbc fractures are pathological and don’t heal normally so will see what he thinks

Barb xx

lynzer
lynzer in reply to Crazydentist

That was my issue as well, it should have been done sooner as well.

Is the spine specialist related to oncology? I’m considering getting another opinion.

Crazydentist
Crazydentist in reply to lynzer

Hi

He’s not linked to oncology but is at the same hospital so has access to my scans etc

I’ve managed to get an appointment this Saturday to discuss kyphoplasty so will let you know what he suggests

I have joint stiffness in different areas but I guess some of this is a side effect of the letrazole and Ibrance..what joy!!!!

Barb xx

lynzer
lynzer in reply to Crazydentist

Yes, me too! Ever since bone Mets and treatments, stiff all over with arthritis and degenerative disc disease plus major joint pain! We’ll get through it! Thanks for writing back : )

lynzer
lynzer in reply to Crazydentist

How did it go? Any news on a treatment for your back?

Hi, Barb! RANTS ARE GOOD! They keep us sane. Just always remember that you are among a lot of caring fellow sailors in the same boat! I do know what you mean, though. For me, every month when I go for labs, consult, and injection, I think of how that little piece of time (usually 1-2 hours) no longer belongs to me. It's the ritual of monitoring my health with pills every night and check ups every month that has taken away a little bit of freedom and peace. God bless you! XO Linda

Hi Linda

Thank you for that..it’s so lovely to be understood by someone in the same situation..although friends and family are kind etc they haven’t a clue how we feel and some of them I think assume I’ll miraculously get better after having some treatments !!

I remember the first Ibrance pill I took...I looked st it and thought ‘ this is poison’ and almost chucked it in the bin...like you I feel a loss of freedom

All the best

Barb xx

My spine lesions are vague sclerotic lesions which means bones are Harding? I think, I didn’t realize that was good well better than some lesions. How many are sclerosis or sclerotic?

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