Dis Breast Cancer Survivors Part IV - GAGWTA

[Feralpeg]

I am currently at the Cancer Center waiting to speak to the oncologist about the thoracic MRI I had done last week. They called me yesterday saying he wanted to see me today. Never a good sign.

I had the kyphoplasty dine on April 8. Since then, things have gotten mich worse. The doctor who did the procedure called to tell me she did the wrong vertebrae. She miscounted. Now, I'm trying to get scheduled to do the correct vertebrae, but they are resistant. From reading the MRI report, things have gotten worse. There was also some mention of lesions on my liver. Of course, I don't understand a lot of the report lingo, so I'm trying to not read to much into it. It never ends!

I will report back once I speak to the doctor. Say a quick prayer for me if you have time!

 

[snappy]

I have you in my prayers, Peg, along with you, Zelly and you, Smiley.

 

[ZellyB]

Thanks for posting, and welcome back! Sorry to hear of your more recent issues, but it sounds like things have stabilized which is great! How are you coping with everything?

Things are stable for the time being and that's good and the procedures and treatments have certainly helped with the pain. Coping is a day-to-day event of course, but mostly I do pretty well. There are days where it's harder and I'm overwhelmed with sadness and fear, but most days I'm able to be happy that I'm still here and that I manage for the most part well. I'm still working full-time (although I miss days right after treatment) and I was very lucky to be able to step down into a job with a lot fewer demands and stress. It's been good for me mentally to still have a job that forces me to get up and out on a daily basis. I have a great network of family and friends who help me too. My husband is a rock and has taken on so much more responsibility around the house since my physical limitations are a hinderance. He's a jewel. I'm very lucky.

Hi there! I was just in for a bone scan yesterday, been having such bad pain in my vertabrae in my neck, I am waiting on edge for the call with results. It has been 10 years 6 months since my initial Bc. Its good to hear from people who are coping with metastisies.
the weather was glorious here for most of April, record high temps, full sun! We got our patio done a hot tub set up, all the furniture and fire tables in place and hubby built the cutest bridge! We have a very beachyhouse and yard, we live about 3 blocks from the real beach. We have a firepit area thats like being at the beach then the bridge is like a dock going through my vegetable garden pots to the new patio with table and chairs, hot tub etc, my palm tree is getting bigger and the bananas have already sprouted out, they will be at least 15 feet tall this year! Now the fruit trees are all blossoming, its a real paradise.We dont have a lot of money, so its not something off a home and gardenshow but it makes us happy we have things to finish, some house painting and beach pebbles to go under ghe bridge. View attachment 570995View attachment 570996View attachment 570997View attachment 570998View attachment 570999View attachment 571000View attachment 571001View attachment 571002

I'm so sorry to hear about the pain in your neck vertebrae. I also cope with pain in my T1 vertebra. Nothing they can really do to help with it unfortunately, but pain meds are able to control the worst of it thankfully. I also struggle with a tumor on my sternum that can cause a lot of pain, but it's been a bit better of late. I hope you get some encouraging news from the scan. That wait between the scan and getting the results can be agonizing. It's often the time I struggle the most. Sending up a prayer for you.

Your patio looks like a wonderful oasis. Enjoy it!

I am currently at the Cancer Center waiting to speak to the oncologist about the thoracic MRI I had done last week. They called me yesterday saying he wanted to see me today. Never a good sign.

I had the kyphoplasty dine on April 8. Since then, things have gotten mich worse. The doctor who did the procedure called to tell me she did the wrong vertebrae. She miscounted. Now, I'm trying to get scheduled to do the correct vertebrae, but they are resistant. From reading the MRI report, things have gotten worse. There was also some mention of lesions on my liver. Of course, I don't understand a lot of the report lingo, so I'm trying to not read to much into it. It never ends!

I will report back once I speak to the doctor. Say a quick prayer for me if you have time!

I cannot believe they did the procedure on the wrong vertebrae. How is that even possible? I'm so sorry that happened to you! Why are they resistant about repeating the procedure? Too risky? I'm also sorry to hear about the added concerns from your MRI. Sending you prayers.

 

[Feralpeg]

Things are stable for the time being and that's good and the procedures and treatments have certainly helped with the pain. Coping is a day-to-day event of course, but mostly I do pretty well. There are days where it's harder and I'm overwhelmed with sadness and fear, but most days I'm able to be happy that I'm still here and that I manage for the most part well. I'm still working full-time (although I miss days right after treatment) and I was very lucky to be able to step down into a job with a lot fewer demands and stress. It's been good for me mentally to still have a job that forces me to get up and out on a daily basis. I have a great network of family and friends who help me too. My husband is a rock and has taken on so much more responsibility around the house since my physical limitations are a hinderance. He's a jewel. I'm very lucky.



I'm so sorry to hear about the pain in your neck vertebrae. I also cope with pain in my T1 vertebra. Nothing they can really do to help with it unfortunately, but pain meds are able to control the worst of it thankfully. I also struggle with a tumor on my sternum that can cause a lot of pain, but it's been a bit better of late. I hope you get some encouraging news from the scan. That wait between the scan and getting the results can be agonizing. It's often the time I struggle the most. Sending up a prayer for you.

Your patio looks like a wonderful oasis. Enjoy it!



I cannot believe they did the procedure on the wrong vertebrae. How is that even possible? I'm so sorry that happened to you! Why are they resistant about repeating the procedure? Too risky? I'm also sorry to hear about the added concerns from your MRI. Sending you prayers.

The doctor who did the kyphoplasty said I have one less thoracic vertebrae than most people so she counted wrong. She said that from now on she will count from both directions. Lol.

I just spoke with the oncologist. The good news is that there is nothing new in the latest MRI other than additional inflammation around the fracture. Unfortunately, the radiology doctor won't agree to do anything more until they convince her that the cancer lesions on the MRI are truly inactive. So, I am scheduled for another Pet Scan on Friday. I am waiting now to see the cancer center radiologist. They may decide to do some radiation on my back prior to the next kyphoplasty to bring down the inflammation, strengthen the area and convince the other doctor that there is no current cancer in the area.

At this point, all I want is relief! The oncologist did give me a prescription for tramadol for the pain. So, good news in that they are taking some action. Wish it was just faster!

 

[smiley_face2]

Love that, smiley! It looks like somewhere I’d definitely love to sit and hang for a while, very cozy! You guys were so imaginative, I love all the little touches you included to make it really feel like a little oasis. Praying for good results from your scan, and glad you’ve had such good weather!

Thankyou! Over here on the west coast we are very artsy crafsty lol we hauled home the ends of logs with holes in them, ( they are cut iff from the logs that are chained together to make a pen to hold loose logs being towed to the mills, when they start to get worn the loggers cut them off and drill a new hole and the cut off ends wash up on the beaches, yhey are very popular to have a group of them at the end of your driveway too ) for little end tables beside the chairs. I want to have adventureland from disneyland in my yard since the border is still closed and we cant go there!

 

[smiley_face2]

The doctor who did the kyphoplasty said I have one less thoracic vertebrae than most people so she counted wrong. She said that from now on she will count from both directions. Lol.

I just spoke with the oncologist. The good news is that there is nothing new in the latest MRI other than additional inflammation around the fracture. Unfortunately, the radiology doctor won't agree to do anything more until they convince her that the cancer lesions on the MRI are truly inactive. So, I am scheduled for another Pet Scan on Friday. I am waiting now to see the cancer center radiologist. They may decide to do some radiation on my back prior to the next kyphoplasty to bring down the inflammation, strengthen the area and convince the other doctor that there is no current cancer in the area.

At this point, all I want is relief! The oncologist did give me a prescription for tramadol for the pain. So, good news in that they are taking some action. Wish it was just faster!

Peg I am so sorry you went through that surgery basically for nothing tramadol does work very well I have been on it for a year and half. It improved the quality of my life SO much! I take it for pain from the spasms caused by my achalasia and lower vertabrae, but the neck pain not so much.

 

[smiley_face2]

Things are stable for the time being and that's good and the procedures and treatments have certainly helped with the pain. Coping is a day-to-day event of course, but mostly I do pretty well. There are days where it's harder and I'm overwhelmed with sadness and fear, but most days I'm able to be happy that I'm still here and that I manage for the most part well. I'm still working full-time (although I miss days right after treatment) and I was very lucky to be able to step down into a job with a lot fewer demands and stress. It's been good for me mentally to still have a job that forces me to get up and out on a daily basis. I have a great network of family and friends who help me too. My husband is a rock and has taken on so much more responsibility around the house since my physical limitations are a hinderance. He's a jewel. I'm very lucky.



I'm so sorry to hear about the pain in your neck vertebrae. I also cope with pain in my T1 vertebra. Nothing they can really do to help with it unfortunately, but pain meds are able to control the worst of it thankfully. I also struggle with a tumor on my sternum that can cause a lot of pain, but it's been a bit better of late. I hope you get some encouraging news from the scan. That wait between the scan and getting the results can be agonizing. It's often the time I struggle the most. Sending up a prayer for you.

Your patio looks like a wonderful oasis. Enjoy it!



I cannot believe they did the procedure on the wrong vertebrae. How is that even possible? I'm so sorry that happened to you! Why are they resistant about repeating the procedure? Too risky? I'm also sorry to hear about the added concerns from your MRI. Sending you prayers.

Zelly, I am really glad you are coping so well! I have a rock of a husband too, 41 years together and I love him more than ever

 

[ZellyB]

Quick update with some encouraging news. I started my new chemo regimen 3 months ago and had my first CT and bone scan to see if it's working. Results showed no further progression and even some slight decrease in some of the lesions, so it appears the current treatment is keeping things in check. Very happy with this news so I have more time to carry on the fight. Hope everyone else is doing well.

 

[smiley_face2]

Quick update with some encouraging news. I started my new chemo regimen 3 months ago and had my first CT and bone scan to see if it's working. Results showed no further progression and even some slight decrease in some of the lesions, so it appears the current treatment is keeping things in check. Very happy with this news so I have more time to carry on the fight. Hope everyone else is doing well.

Great news!

 

[disneyholic family]

Quick update with some encouraging news. I started my new chemo regimen 3 months ago and had my first CT and bone scan to see if it's working. Results showed no further progression and even some slight decrease in some of the lesions, so it appears the current treatment is keeping things in check. Very happy with this news so I have more time to carry on the fight. Hope everyone else is doing well.

very encouraging news!!! thanks for the update!!
.

 

[Pea-n-Me]

Quick update with some encouraging news. I started my new chemo regimen 3 months ago and had my first CT and bone scan to see if it's working. Results showed no further progression and even some slight decrease in some of the lesions, so it appears the current treatment is keeping things in check. Very happy with this news so I have more time to carry on the fight. Hope everyone else is doing well.

That’s wonderful news, thanks for sharing!

 

[Feralpeg]

ZellyB, that's great news! So happy for you!

Well, things have been up and down for me. While addressing the issue of the vertebrae fracture, they discovered cancer had moved to my spine. The pain continued to get much worse. They ended up giving me a prescription for Percocet as I couldn't sleep at all. The oncologist decided to treat the cancer in my spine with radiation

I finished 15 rounds of radiation on my spine. The pain is pretty much gone. Apparently, the majority of the pain was coming from the cancer...not the vertebrae fracture. The fracture is not completely healed and still causing twinges here and there, but I am giving it some time before undergoing any further treatment.

Unfortunately, while doing the tests on my spine, they discovered some cancer lesions on my liver. The oral chemo, Ibrance, I've been taking for the past 3 years had stopped working. Cancer cells are just like any other cells. They can build a tolerance against any drug. It's the reason doctors are reluctant to give out antibiotics easily. In a way, I was very lucky to have the back thing because it alerted us to the fact that the cancer was on the move again. So, time for a new strategy.

I had a liquid biopsy performed on 5/4. It was just a blood draw sent off to a special lab. The point of the biopsy was to look for mutations on the cancer cells. We hoped there would be mutations. If so, it would give us several different options including targeted gene therapy. If no mutations were present, it would mean traditional chemo and radiation again. Not something I hoped for.

Finally, after 3 weeks, I got the biopsy results. The cancer cells have a ton of mutations! Yay!

Don't ask me to explain how this all works. It's a very complicated form of immunotherapy. I'm just happy to qualify! As soon as the insurance companies work things out and they can obtain the drug, I will begin once a month infusions of Kytruda. You've probably seen commercials about this drug. It has relatively few bad side effects for most people. Fatigue will be an issue...nothing new there. I will have a Pet Scan after 3 months to see how things are going...again.

So, I'm hanging in there. One more battle to fight, but that's okay. As long as I'm fighting, I'm still in the game!

 

[Pea-n-Me]

ZellyB, that's great news! So happy for you!

Well, things have been up and down for me. While addressing the issue of the vertebrae fracture, they discovered cancer had moved to my spine. The pain continued to get much worse. They ended up giving me a prescription for Percocet as I couldn't sleep at all. The oncologist decided to treat the cancer in my spine with radiation

I finished 15 rounds of radiation on my spine. The pain is pretty much gone. Apparently, the majority of the pain was coming from the cancer...not the vertebrae fracture. The fracture is not completely healed and still causing twinges here and there, but I am giving it some time before undergoing any further treatment.

Unfortunately, while doing the tests on my spine, they discovered some cancer lesions on my liver. The oral chemo, Ibrance, I've been taking for the past 3 years had stopped working. Cancer cells are just like any other cells. They can build a tolerance against any drug. It's the reason doctors are reluctant to give out antibiotics easily. In a way, I was very lucky to have the back thing because it alerted us to the fact that the cancer was on the move again. So, time for a new strategy.

I had a liquid biopsy performed on 5/4. It was just a blood draw sent off to a special lab. The point of the biopsy was to look for mutations on the cancer cells. We hoped there would be mutations. If so, it would give us several different options including targeted gene therapy. If no mutations were present, it would mean traditional chemo and radiation again. Not something I hoped for.

Finally, after 3 weeks, I got the biopsy results. The cancer cells have a ton of mutations! Yay!

Don't ask me to explain how this all works. It's a very complicated form of immunotherapy. I'm just happy to qualify! As soon as the insurance companies work things out and they can obtain the drug, I will begin once a month infusions of Kytruda. You've probably seen commercials about this drug. It has relatively few bad side effects for most people. Fatigue will be an issue...nothing new there. I will have a Pet Scan after 3 months to see how things are going...again.

So, I'm hanging in there. One more battle to fight, but that's okay. As long as I'm fighting, I'm still in the game!

You explained it really well, Peg! And so glad there were mutations! It seems like you have a good team hard at work for you. And you are a fighter! Prayers for all fighting this fight and those who love them.

 

[ZellyB]

ZellyB, that's great news! So happy for you!

Well, things have been up and down for me. While addressing the issue of the vertebrae fracture, they discovered cancer had moved to my spine. The pain continued to get much worse. They ended up giving me a prescription for Percocet as I couldn't sleep at all. The oncologist decided to treat the cancer in my spine with radiation

I finished 15 rounds of radiation on my spine. The pain is pretty much gone. Apparently, the majority of the pain was coming from the cancer...not the vertebrae fracture. The fracture is not completely healed and still causing twinges here and there, but I am giving it some time before undergoing any further treatment.

Unfortunately, while doing the tests on my spine, they discovered some cancer lesions on my liver. The oral chemo, Ibrance, I've been taking for the past 3 years had stopped working. Cancer cells are just like any other cells. They can build a tolerance against any drug. It's the reason doctors are reluctant to give out antibiotics easily. In a way, I was very lucky to have the back thing because it alerted us to the fact that the cancer was on the move again. So, time for a new strategy.

I had a liquid biopsy performed on 5/4. It was just a blood draw sent off to a special lab. The point of the biopsy was to look for mutations on the cancer cells. We hoped there would be mutations. If so, it would give us several different options including targeted gene therapy. If no mutations were present, it would mean traditional chemo and radiation again. Not something I hoped for.

Finally, after 3 weeks, I got the biopsy results. The cancer cells have a ton of mutations! Yay!

Don't ask me to explain how this all works. It's a very complicated form of immunotherapy. I'm just happy to qualify! As soon as the insurance companies work things out and they can obtain the drug, I will begin once a month infusions of Kytruda. You've probably seen commercials about this drug. It has relatively few bad side effects for most people. Fatigue will be an issue...nothing new there. I will have a Pet Scan after 3 months to see how things are going...again.

So, I'm hanging in there. One more battle to fight, but that's okay. As long as I'm fighting, I'm still in the game!

Sorry to hear the cancer is in the move but great news on the mutations. I've heard really good things about Kytruda. Someone I know with advanced colon cancer was on it and she's now cancer-free so it worked beautifully for her. Hoping you can see great results!

 

[emcarle27]

Sorry to hear the cancer is in the move but great news on the mutations. I've heard really good things about Kytruda. Someone I know with advanced colon cancer was on it and she's now cancer-free so it worked beautifully for her. Hoping you can see great results!

I've heard amazing things about Kytruda. There's an older woman in our complex who has a dog ( dog moms tend to unite) and she swears that's why her scans have been so good.

Back in 2018, my boyfriend (now fiance) was diagnosed with testicular cancer. He had back pain for weeks and didn't know why. Finally the pain got so bad, he went to urgent care and they were the ones who found it.

He went through a few cycles of chemo that year along with a pretty invasive surgery. They basically cut him right down the middle to remove some remaining lymph nodes because they didn't want to run the risk of it potentially coming back.

He's been cancer free for over 2 years now. He just went last Friday for his 6 month bloodwork and everything looks great.

Sending my love to everyone on here. As a significant other of someone who went through cancer, I can remember the emotional rollercoaster I went through, let alone what he went through.

 

[Pea-n-Me]

I've heard amazing things about Kytruda. There's an older woman in our complex who has a dog ( dog moms tend to unite) and she swears that's why her scans have been so good.

Back in 2018, my boyfriend (now fiance) was diagnosed with testicular cancer. He had back pain for weeks and didn't know why. Finally the pain got so bad, he went to urgent care and they were the ones who found it.

He went through a few cycles of chemo that year along with a pretty invasive surgery. They basically cut him right down the middle to remove some remaining lymph nodes because they didn't want to run the risk of it potentially coming back.

He's been cancer free for over 2 years now. He just went last Friday for his 6 month bloodwork and everything looks great.

Sending my love to everyone on here. As a significant other of someone who went through cancer, I can remember the emotional rollercoaster I went through, let alone what he went through.

Thanks for sharing your (and his) story. Glad he is doing well.

 

[luvmarypoppins]

Peg - You have certainly been through a lot lately and you are such a fighter! So glad your care team has a good treatment plan for you. Wishing you and Kendall all the best.

Zelly B - Thanks for sharing your story. Your attitude is so great. Hoping all goes well.

emcarle - How wonderful to hear your fiancé is doing well.

My medical stuff is starting up again. I had blood work for the 6 month cancer follow up. The vascular surgeons office called and said they changed the follow up for the surgery from a year to 6 months. So next week I am getting a neck sono and all the aortic ct’s then I see the surgeon on the 29th. I have not been feeling well so we shall see.

Ds1 and dil are looking forward to their belated Disney moon. He asked me for my shopping list lol. They are eating at Be Our Guest and hopefully Cali Grill during fireworks. Ds2 finally going to the office every day and that dil refuses to be by the unvaccinated ds2 and dil so all family celebrations are separate. Ds3 still doing covid ICU but it’s manageable. I am concerned when all the students come back to campus. Hope it’s not from the lecture hall into the hospital.
Dh working hard and just got back from a Massachusetts trip.
GAGWTA

 

[luvmarypoppins]

Just a quick update- I saw the vascular surgeon today. He said the ct’s showed that my kidney aneurysm has shrunk and the mammary artery aneurysm is stable so I don’t have to see him again until next June. PTL! Next up in a few weeks is the pcp visit and 6 month cancer check up.

Hope everyone is doing well. Happy 4th of July to all.
GAGWTA

 

[Feralpeg]

LMP, that's great news! So happy for you!

My next Keytruda infusion is July 9th. I'm having more side effects with this drug than I had with the Ibrance, but I'm hanging in there.

Happy 4th of July!

 

[snappy]

Thanks for sharing the good news, LMP!

Peg, hope the side effects subside.

All is well here. Mom needs more of my time these days. I am fortunate to be close to her senior retirement. facility and a lot of time on my hands.