Dis Breast Cancer Survivors Part IV - GAGWTA

[Grace&Carolinesmom]

Feralpeg - Sending prayers and huge hugs your way. You are strong and will get through this!!

 

[Pea-n-Me]

About 3 weeks ago, I started experiencing intense pressure in my head upon standing. It isn't every time I stand and only last about a minute. Oddly, when this happens, I also experience some pain in my arms.

I know that headaches are one side effect of Keytruda, so I tried to write them off. This past week, the headaches have come more frequent and more intense. Yesterday, was a particularly bad day, so I left a message for my oncologist. Today, they had me come in for lab work and she scheduled a brain MRI to b rd performed stat. I had the MRI early this afternoon.

I just received a call asking me to meet with the oncologist first thing Monday morning. Of course, tney won't tell me anything over the phone, but I have a very bad feeling about this.

I'd appreciate any prayers you can spare. I'm afraid,after fighting this thing 40 years, I'm about to lose the battle.

I wish they called you Monday instead. Nothing worse than being at home for a weekend worrying. Saying prayers for you, Peg. (Just want to add that my Mom had multiple brain tumors and with one shot of radiation, they all went away! It was pretty amazing! Hold that thought!)

@GraceandCarolinesmom, I’m glad they can do the surgery at the same time as your other surgery. Thank God for small favors.

 

[Dan Murphy]

.I am now having a lumpectomy and lymph node dissection as well as my gall bladder removed on Wednesday Aug 11.

Good to get it all done at one time. My wife also had a lumpectomy and lymph node removal, 15 if I recall. After that, cheno and radiation.

I'd appreciate any prayers you can spare.

For sure Peg. I will have our church prayers warriors praying also. 's

 

[Dan Murphy]

I will have our church prayers warriors praying also

Just requested, Peg

 

[snappy]

Grace & Caroline’s mom, I think you have a good surgical plan. Good luck and thinking good thoughts for you and your surgeon.

Peg, as alway, you are in my thoughts and prayers.

 

[luvmarypoppins]

Peg - sending you my thoughts and prayers. Sending you lots of hugs too.

G&C Mom -Wishing you all the best with your upcoming surgery

 

[Pea-n-Me]

Peg - sending you my thoughts and prayers. Sending you lots of hugs too.

G&C Mom -Wishing you all the best with your upcoming surgery

How are things going for you, lmp?

 

[Pea-n-Me]

Been thinking of you all weekend, @Feralpeg, and hope you are doing ok.

Maybe there is just a problem with the medication or something and they have to change it.

 

[Feralpeg]

Thank you all for your kind responses. I'm trying to remain positive. The Keytruda has so many side effects. From what I've read, it can cause low blood pressure that results in headaches. It's just the not knowing that makes this difficult. These things always seem to happen before a weekend.

I will find out tomorrow morning. Fingers crossed this is just one more bump in the road. I will let you know when I know. Love you all!

 

[Feralpeg]

Well, I am still at the oncologist. I am waiting to speak to the radiologist. Cancer has spread to my skull. There are multiple lessions. It is not in the actual brain tissue. It is the pressure the lessions are putting on the brain causing the pain.

Unfortunately, the PET scan does not include the head. They don't scan unless there is an indication that they should. My oncologist was very surprised at the MRI results as my blood work was showing improvement.

The plan is to radiate the lessions. I'll update when I have more info. The good part is that my oncologist said we aren't down yet!

 

[Pea-n-Me]

Well, I am still at the oncologist. I am waiting to speak to the radiologist. Cancer has spread to my skull. There are multiple lessions. It is not in the actual brain tissue. It is the pressure the lessions are putting on the brain causing the pain.

Unfortunately, the PET scan does not include the head. They don't scan unless there is an indication that they should. My oncologist was very surprised at the MRI results as my blood work was showing improvement.

The plan is to radiate the lessions. I'll update when I have more info. The good part is that my oncologist said we aren't down yet!

I like your oncologist! When we heard that Mom needed brain radiation, I was pleasantly surprised to find out it wasn’t as bad as I’d remembered it when a friend of mine had it 25 yrs ago. In those days, she had to have halo traction (the big steel thing screwed into the head) and it was difficult. I knew Mom wouldn’t want that. But today they use a different system which is much easier. Mom wanted to do it, so we (along with team) decided to take it step by step to see how she did, and she did great. They fitted her head with a mask, and told her she’d have the mask on which would help her not move when she was on the table for radiation, and she didn’t! (The mask gets screwed into the table. Will post a pic below.) And as I said, just one dose took care of multiple lesions. It’s amazing what can be done today. It still stinks to have to deal with. Have been thinking of you and keeping you in my prayers. You are a total warrior.

 

[Feralpeg]

Thanks, Pea! Knowing the skull radiation wasn't that bad makes me feel better. However, my radiation is off for the time being.

I feel like I'm in an episode of House. Each time I go in, I het different info.

Today, I went in for my Pet Scan. While there, the radiation oncologist called me to her office. She starts by telling that she doesn't like sending anyone to SimonMed Imaging. They sent me there because that was the only place that had an appointment available quickly.

The report from the radiologist on my MRI said there were a number of lessions on my skull. Based on the report, they had told me they would need to do 21 rounds of radiation. When both my oncologist and the radiation oncologist were able to actually see the disk of the MRI, they didn't see any lessions. I have a small spot on the bone near one ear. Nothing else. They said they had nothing to radiate. They saw nothing that could be causing the headaches.

So, they are in agreement that the Keytruda is probably causing the headaches. In rare cases, Keytruda can actually cause encephalitis. They doubt that is true on my case. Instead, they're putting me on steroids to try reducing inflammation. If I'm not feeling better soon, they will postpone my next Keytruda infusion to see if things improve. If they don't, it will mean more invasive test. I'm hoping the steroids do the trick.

Maybe, I need Dr House on my team!

 

[Pea-n-Me]

Thanks, Pea! Knowing the skull radiation wasn't that bad makes me feel better. However, my radiation is off for the time being.

I feel like I'm in an episode of House. Each time I go in, I het different info.

Today, I went in for my Pet Scan. While there, the radiation oncologist called me to her office. She starts by telling that she doesn't like sending anyone to SimonMed Imaging. They sent me there because that was the only place that had an appointment available quickly.

The report from the radiologist on my MRI said there were a number of lessions on my skull. Based on the report, they had told me they would need to do 21 rounds of radiation. When both my oncologist and the radiation oncologist were able to actually see the disk of the MRI, they didn't see any lessions. I have a small spot on the bone near one ear. Nothing else. They said they had nothing to radiate. They saw nothing that could be causing the headaches.

So, they are in agreement that the Keytruda is probably causing the headaches. In rare cases, Keytruda can actually cause encephalitis. They doubt that is true on my case. Instead, they're putting me on steroids to try reducing inflammation. If I'm not feeling better soon, they will postpone my next Keytruda infusion to see if things improve. If they don't, it will mean more invasive test. I'm hoping the steroids do the trick.

Maybe, I need Dr House on my team!

Wow! What a great reprieve! It’s frustrating, but at the same time, calls for celebration!

 

[luvmarypoppins]

Peg - I am so very happy to hear the news that you are getting a little break and waiting and watching instead of the radiation. I hope the steroids help alleviate some of the issues you are having. Hang in there! You are a warrior!

This week I discovered that one of the side effects of taking Plavix is a black eye. Ds3 insisted I go to the eye dr. So I got an emergency appointment with a very nice dr. She said my eyeball is fine it’s just the bruise is following a blood vessel line.
Now I just called the pharmacy and they told me they never got my endo’s script for my one med. I think I had this problem with her once before. I have no pills left for tomm. I called the dr med refill number so we will see what happens. My B plan is to have Dh stop at the main office tomm but her actual office is where that eye dr. was that I was at this week sigh.

Covid is going up around here again. 34 at the hospital and 5 of those were fully vaccinated. We are sure ds3 will be assigned there. He is the only float pool nurse who can manage a covid unit because everyone else are new hires.
GAGWTA

 

[ZellyB]

Peg that is great news that you have not had a spread of lesions in your skull. I'm so glad you won't need to do the radiation treatments. I'm sorry to hear the Keytruda may be causing the headaches but hope the steroids will help with that.

G&C's mom glad to hear that they can do both surgeries. But, wow, gallbladder issues AND having to deal with cancer surgery is just adding insult to injury!

I'm scheduled for my regular scans again at the end of this month. I feel like I've had some increased pain in my sternum although my oncologist felt it at my appointment and couldn't palpate any changes there, so hoping it's just some over reacting on my part. I hate the month when I get scans. I just end up in a bad head space for the entire month worrying about what the scans will show. It's not a fun place to be. My oncologist has another treatment all lined up for me when this one begins to fail, so it's a least comforting to know the next step is already established, but I certainly hope I can buy more time on the current treatment before having to shift to another. Otherwise things are about the same for me. Just keepin' on.

 

[Pea-n-Me]

I hate the month when I get scans. I just end up in a bad head space for the entire month worrying about what the scans will show. It's not a fun place to be.

I know what you mean. I feel the same way. I hope everything goes well for you.

 

[Feralpeg]

Well, this really got to me.

Kendall is amateur photographer. She has done multiple photo shoots for people to hone her craft. After the shoots, people on Nextdoor talk about their experience working with her.

Today, I got a message from a lady on Nextdoor asking me if I would pass her info on to Kendall. She wants to set up a session the second week of September. She wants casual, intimate documentation of her husband shaving her head. She begins chemo on 8/23.

I shared my story with her and told her to contact me if she had any questions or just needed support.

Kendall isn't home, I am sure she will agree to do session. This hits very close to home.

I find out the results of my latest PET scan tomorrow. Wish me luck.

 

[Seahorse17]

Well, this really got to me.

Kendall is amateur photographer. She has done multiple photo shoots for people to hone her craft. After the shoots, people on Nextdoor talk about their experience working with her.

Today, I got a message from a lady on Nextdoor asking me if I would pass her info on to Kendall. She wants to set up a session the second week of September. She wants casual, intimate documentation of her husband shaving her head. She begins chemo on 8/23.

I shared my story with her and told her to contact me if she had any questions or just needed support.

Kendall isn't home, I am sure she will agree to do session. This hits very close to home.

I find out the results of my latest PET scan tomorrow. Wish me luck.

Good luck!

 

[snappy]

You will be on my thoughts and prayers, Peg.

 

[Dan Murphy]

Well, this really got to me.

Kendall is amateur photographer. She has done multiple photo shoots for people to hone her craft. After the shoots, people on Nextdoor talk about their experience working with her.

Today, I got a message from a lady on Nextdoor asking me if I would pass her info on to Kendall. She wants to set up a session the second week of September. She wants casual, intimate documentation of her husband shaving her head. She begins chemo on 8/23.

I shared my story with her and told her to contact me if she had any questions or just needed support.

Kendall isn't home, I am sure she will agree to do session. This hits very close to home.

I find out the results of my latest PET scan tomorrow. Wish me luck.

Wow, Peg, just wow. I can understand why. this got to you. Thanks for sharing.

Good wishes on the PET scan.