Will my spine start to crumble?
Scan says cancer T/out my spine. Comp... - SHARE Metastatic ...
Scan says cancer T/out my spine. Compression fracture at T3 bulging disc at L2. I’m on Faslodex and Verzenio since June. Is this the end?
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Pachira
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Pachira - take a deep breath - there is so much that can be done for you. Some of it might mean surgery, bone cement and radiation. I have had all those things in the past 8 years.
When I was diagnosed a tumour had eaten through my T12. It was surgery or paralysis, I did the surgery, I had to learn to walk again but it was so worth it. I walk without even a cane. That location had extensive radiation. My c5 since developed a micro fracture and tumour. I had it radiated. We have discussed cement in other areas but I am not there yet.
All that with treatment and I am still here. PS I have 30 plus spots to my spine as well as other bones - ribs, skull, femur, sternum, pelvis.
Just go through one door at a time. Know there are indeed lots of options I had 5 different treatments and didn’t start chemo until this year.
You are not alone!
Hugs💜 Tammie
Thank you Tammie for your quick response! You have given me hope that there are options for me. I see my Onc on Wednesday so we’ll see what he says. I have felt recently that when they say it’s t/out my spine, I’m a lost cause. I did go to the ortho in April and they diagnosed 5 bulging discs but the NP told me to go and live my life. When I asked my Onc why I was bent over he told me it was severe arthritis in my hip and they won’t operate. I was wondering if it was all in my mind or maybe because I’m 73 or the Hospitals are struggling right now. I’ll be patient now until Wednesday knowing I have questions. Thank you again Chris xx
Hi again - my surgery was pre-covid so hopefully they will look something to assist. While they decide what to do ask if a back brace would be helpful. My onc. was adamant I wear a girdle. Amazon had a good adjustable back brace.
Write out all your questions and all the options you can come up with. I find it helps to have a list before the appointment otherwise they will say something and my mind goes wandering on what they said and I forget to ask everything I wanted to ask.
wow that was so hopeful! Thanks for writing for all of us.
hi Tammie I’m being referred to radiation! Thank you again.
That is great news!
It's a good start - make sure you follow their guidelines. A few tips I can recommend - loved the Glaxal Base Cream (cheapest at Costco for me) and I took it too radiation with me and put it on before I left the building. I did not blister even when I went for multiple treatments (3 weeks daily was the longest one). Depending on where you are being radiated there will be side effects but they are temporary and you will start to feel way better a couple of weeks after radiation is complete.
Hang in there we are all rooting for you!
Tammie
thanks Tammie. I just came back from picking up the antibiotic at Costco lol. I’ll put the cream on my list. I’ve also read somewhere melatonin is helpful but I’ll ask at the consultation Chris Xx
Dear Pachira
I felt desperate this time last year, mets all over my skeleton as well as other organs, and a compression fracture on T5. I was in terrible pain, could barely move.
Fast forward 12 months and I'm still here, I've had chemo and am on my second line of treatment (Kadcyla). I'm feeling well though the mets are still extensive, so I just take it one day at a time.
I am on Zometa for bone strengthening, plus calcium/vit D. I haven't had any other treatment to my spine and T5 is still fractured 🥹 but I am coping ok. I'm going to get an electric heat pad just to help with the soreness (morphine is doing the heavy lifting!)
I am sure there are lots of treatment options for you, don't look too far ahead. At the same time don't let them fob you off! Sometimes treatments that didn't seem viable initially, become so -- eg I was told that after my whole brain radiotherapy, there would be nothing more that could be done for my brain lesions... now the onc says I might be a candidate for an operation.
Can you take someone else to your appointments who can take notes, help you remember what you want to ask etc?
Please don't feel desperate. The sun is shinjng here today (UK), I hope it is for you too and I wish you all the very best.
Lucy
thank you for your kind words. I was laying in bed and started to worry but as you said what’s the point. I thought about taking my husband to the appointment but as Tammie suggested I’ve been working on some questions so I might prefer to go on my own. I am from Scotland so I had hoped to make a trip home. All the relatives are gone but my old school pal and I write (email) every week. I have a feeling she’ll have rain and living in the PNW the weather is very similar. One foot before the other Thanks again Chris
Dear Pachira, I'm reading Hal Elrod's book Miracle Equation and it has helped me to maintain positivity. I highly recommend it. Sending love from England.
I’ll check that out. I need to listen to my CD “Soirit of the Glen “, that always gives me a lift Chris
I also had 2 compression fractures in my spine. Ironically, I had surgery to fix that 5 years ago today! They removed a vertebrae that was the consistency of butter and replaced it with a plate and 9 screws! I di have to learn how to walk again and it was several months of recovery, but I am pain free and NED. I take Ibrance and Letrozole and I have quarterly infusions of Zometa to help strengthen my bones. I wish you luck - there is HOPE!!!
No it's not over. I also have compression fractures. I would highly recommend physical therapy - got me out of a wheelchair. The fractures are still there, but my back stabilization muscles are strong enough now that I don't feel much pain. Best of luck!
Hi Pachira, I also had 2compression francturs, went through the surgery and still learning how to walk.
You already got a lot of good responses, I just want to add that my oncologist wanted to change my systemic treatment seeing it as disease progression. However, I resisted and PET scan proofed me right being stable.
Perhaps this would be helpful to you.
Witching you the best.
thank you! I saw my oncologist today and he has me continuing on Verzenio but he wants to watch the tumor markers. My Ca15-3 is around 450 which he refers to as stable. He also referred me to radiation for the L2 but says I might need kyroplasty for the compression fracture. He’s ordered an antibiotic for my lung problem and will change me to piqray if he finds the Verzenio doesn’t seem to be working. I have a plan! Thank you ladies for all your advice. I had been feeling that after an easy 5 years on Arimidex I didn’t have a lot of hope. ChrisXx
Hey Chris
I have been watching all the great responses - glad your appointment went well. Do you get to see your school pal - those are the best moments.
Don't be concerned about your numbers too much mine are over 600 - watch they are watching for is fluctuation, and if it does all that means is it is time to try something new!
Let us know when you start radiation. We are all here supporting you!
Tammie
Thank you Tammie. Your initial response really helped me a lot and the subsequent responses are making me think of my options. The Onc gave me an antibiotic as i've had a continuous cough for over a year. On the scan they saw that the nodules they had been watching were gone but i've now got a larger one that could be mets on the other side of my lung. The onc showed me pictures but if he couldn't be sure what it was then either can i. Something also showed up in the liver but i'm not sure if he was overwhelmed with all the possible problems, as he dismissed that. I'm just about to write my War and Peace to my friend in Bothwell. She'll write to me on Monday. I have been hoping to make a trip back home but until i can walk for a longer distance without pain, it would be madness. My husband who is coming up to 82 (he's just come back from walking the dog) is now exercising on the Bowflex. He has CMML but he's in better shape than me..lol It's great to hear from my old Scottish school pal and as with villages back home, i get to hear aout old school pals that are still around and never left the area. I miss California, Bodega Bay and Felton where we took the trailer but camping was always hard on the back and we have the cover back on it so it won't be until next year before we decide if we're going to take it out again. Thank you for keeping in touch i'll let you know what they tell me at the Radiation consultation on the 11th. Chris
hi Tammie. I saw the radiologist last Friday and he was wonderful!! He spent an hour and 20 minutes going over my scans. I was shocked to see the amount of cancer in my spine. He said he wasn’t so worried about the compression fracture but was very concerned about the tumor on my L2. You could see there was only none round the edges and the rest was tumor. He says he’ll give me 10 low dose sessions as he wants to prevent any loss of mobility if it encroaches in the spinal canal. I feel a bit like Humpty Dumpty and wonder if my bones will bear my weight over time. I guess it’s the next stage of metastasis so one day at a time. I’ve had the grandkids (14. &12) for dinner a couple of times a week as our son is deployed and we’re giving his girlfriend a break. I notice a lot more fatigue but that could be the Verzenio or Faslodex. I go back on the 22nd for my tattoo and to schedule the radiation. I mentioned the gel you recommended and he agreed it was very good but thought the radiation would be so low it wouldn’t be warranted. His concern was the radiation affecting my bowel which will cause diarrhea. Hope you are doing well yourself. Sorry it’s all about me. Hugs Chris xx forgot to mention Dr Allen had just returned from a holiday in Scotland visiting Edinburgh, Glasgow and Skye he said he could move there
Hello!
I am so happy for you! That is good news. I would still use the cream even at low doses. It feels good and cools the skin!
Diarrhea is manageable with the occasional banana and cheese is helpful. If it is still out of control then Imodium occasionally helps me but I only take 1 pill till I can verify if that was enough, 2 swings me too far the other way.
Thanks for your concern, I have indeed had a rough few months. I caught COVID for the first time the and then rebound COVID after the antiviral meds. Finally over that and pneumonia set in. All this sickness has delayed chemo. Stressful but I am finally feeling like I am on the mend!
Sorry if I sound like I am complaining it is just where life is at right now. Grateful I should be well by Christmas.
So happy for your news! Thanks for sharing. May it all be very tolerable for you. Hugs
Tammie
Tammie if anyone needed to have a moan about getting Covid twice then pneumonia it would be you. I love your forward thinking approach to life. Never mind the problems of today but look forward to Xmas! I guess we just have to keep trying to increase our immune system to help us on our way. Thank you for the advice on radiation, I’ll pick up the gel and have a lot of immodium (I rarely used it) because of Verzenio.
A lot of our family emigrated to Canada on the 50 pound assisted passage. ( you might be too young to remember).
Thanks again for your help. I hope you’re feeling stronger but I’m not sure if you’re still working which always amazes me at the resilience of some of our members. Hugs to you Chris xx
