Dis Breast Cancer Survivors Part IV - GAGWTA

[Pea-n-Me]

Keep us in the loop, Peg, and good luck!

 

[Grace&Carolinesmom]

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.

Reading this hit really close to home for me as well as I am in a similar situation,

Crossing my fingers and toes for you today!!

 

[Pea-n-Me]

Losing our hair is one of the hardest parts of this journey. Hugs to all.

 

[luvmarypoppins]

Peg - Thinking of you and I know Kendall would do an amazing job with the photos.
G&C Mom - Wishing you all the best.

Well ds3 told me that his best friend (who is 28) wife was diagnosed with breast cancer. She is 33 I think and they have a 17 month old boy. She already had 2 chemo sessions and she is doing the cold capping. They have very strict rules about it and only her husband can touch her. She has barely lost any of her hair. Her oncologist told them that she won’t be able to have any more biological children. Ds said they gave her the option of freezing her eggs but she didn’t want to do that. He doesn’t want to ask too much. Such heartbreaking news. They live in our town.

Going to the dentist tomm. for a bad toothache. Always something. Just hope he doesn’t send me to the oral surgeon again.
GAGWTA

 

[Feralpeg]

I have to post some pretty bad news. I am in the hospital. On Monday, I experienced something that appeared to be a stroke. It wasn't. They don't know exactly what it was, but believe it is related to my cancer.

It took us by surprise because I had a PET scan recently and had been to see the oncologist. I was told that they gotten the cancer in my spine and the PET had found nothing in my head.

I had a brain MRI about month ago because I've had these brief thunderclap headaches upon standing. The MRI showed a small lesion behind my right ear. They said it was pressing on a new that runs across the face. It was also causing numbness in the area.

So, I get the hospital. The do a CT and an MRI. The hospital neurologist said he saw no sign or cancer in the CT. He saw a tiny lesion behind my right ear in the MRI.

They called my oncologist on Monday. By Tuesday night they had not heard back. I called his emergency number and heard nothing. On Wednesday, I sent my sister to the oncologist office and demanded they call. He called me on the phone to tell the cancer is speard through my brain and is back in my spine. He wants to radiate both. I asked what will happen if I don't. He told me I will have three months. This man, who I've been seeing since 2013, couldn't bother to literally walk across the street to the hospital to tell me.

Needless to say, my family is furious. We are getting second opinions because we don't trust this doctor any more. This may be the end. We just don't know. As I said, they have not determined what caused the incidents. I had three of them altogether, but my potassium was very low.

So, I will be back to report that things are going okay, or Kendall will let you know otherwise. I'm about ready to go for a 4 hour MRI. Wish me luck!

 

[Dan Murphy]

Very sorry to hear this news, Peg. And yes, for sure, get a second, maybe third opinion. You are entitled to that. That doctor does not have the right to be called a doctor.

As always, Peg, you are in my prayers, my good wishes. 's As is Kendall. 's

 

[FQLover]

I am so sorry to hear this news. I absolutely would get a second opinion. I would not trust that guy anymore, either.

I started lurking on this thread this summer when I had a worrisome biopsy coming up. My result ended up being benign, but I still read this thread because I care about how everyone here is doing.

@Feralpeg I am keeping you in my prayers and crossing fingers that this ends up being something less severe--as the hospital neurologist did not see those same results in his look at the CT and MRI.

 

[Pea-n-Me]

I have to post some pretty bad news. I am in the hospital. On Monday, I experienced something that appeared to be a stroke. It wasn't. They don't know exactly what it was, but believe it is related to my cancer.

It took us by surprise because I had a PET scan recently and had been to see the oncologist. I was told that they gotten the cancer in my spine and the PET had found nothing in my head.

I had a brain MRI about month ago because I've had these brief thunderclap headaches upon standing. The MRI showed a small lesion behind my right ear. They said it was pressing on a new that runs across the face. It was also causing numbness in the area.

So, I get the hospital. The do a CT and an MRI. The hospital neurologist said he saw no sign or cancer in the CT. He saw a tiny lesion behind my right ear in the MRI.

They called my oncologist on Monday. By Tuesday night they had not heard back. I called his emergency number and heard nothing. On Wednesday, I sent my sister to the oncologist office and demanded they call. He called me on the phone to tell the cancer is speard through my brain and is back in my spine. He wants to radiate both. I asked what will happen if I don't. He told me I will have three months. This man, who I've been seeing since 2013, couldn't bother to literally walk across the street to the hospital to tell me.

Needless to say, my family is furious. We are getting second opinions because we don't trust this doctor any more. This may be the end. We just don't know. As I said, they have not determined what caused the incidents. I had three of them altogether, but my potassium was very low.

So, I will be back to report that things are going okay, or Kendall will let you know otherwise. I'm about ready to go for a 4 hour MRI. Wish me luck!

Oh, Peg, I’m so sorry to hear this. I had to read your post a second time to let it all sink in. Strange that if you think someone has just three months, that it takes you three days to get back to them. Seems like a lot of time spent waiting and worrying that could’ve been put to better use. But then again, I know that oncologists, by trade, often have a hard time with telling people bad news, especially when it’s really bad. I don’t understand how both the hospital CT and MRI, which are presumably the most recent and accurate, say just one spot of cancer behind your ear, yet the oncologist says it’s spread throughout your brain and in your spine. Why wouldn’t the hospital radiologists concur with that? How can you set up radiation on someone with no demonstrated cancer? I mean, where would you radiate? Very bizarre! Did he say what took him so long to contribute to your case, or why he thinks you have cancer throughout your brain? Let me ask you this, has a cardiologist consulted on your case at all? Because sometimes people can have serious arrhythmias that could mimic a stroke, especially when potassium is very low (we see it all the time)? Sometimes chemo can cause problems in the heart that can cause this (again we see it all the time). I would ask about that. Are you on a heart monitor and has it shown anything unusual? If not, you could ask about a holter monitor, which you can wear at home and it can detect arrythmias. Something to think about. As always, praying hard for you and for a good outcome. You have been through so much, and are such an amazing person! Stay strong, and know we are always here for you. Thank you for the update.

 

[Pea-n-Me]

I care about how everyone here is doing.

Thank you. That’s so nice of you, and it really means a lot to us here.

 

[Pea-n-Me]

One more thought, Peg. I would also want to be sure he has the right patient. Maybe he has you confused with someone else, somehow. It just doesn’t make sense for him to say that based on your most recent imaging results, as well as previous ones.

 

[snappy]

Peg, thinking and praying for you.

 

[Feralpeg]

Thank you all for your thoughts and prayers.
Pea I am a heart monitor. Monday morning, before this all started, I had an MRI with contrast on my back in hopes of getting another procedure on my fractured vertebrae. I'm wondering if I had a reaction to the contrast in combination with my extremely low potassium.

Well, tomorrow they are doing a 48 EEG. I just finished the long MRI of the entire spine and brain. Hopefully, we'll know something soon.

 

[luvmarypoppins]

Peg - My thoughts and prayers are with you and wishing you all the best as always. You are truly an inspiration to all of us.

 

[Pea-n-Me]

Thank you all for your thoughts and prayers.
Pea I am a heart monitor. Monday morning, before this all started, I had an MRI with contrast on my back in hopes of getting another procedure on my fractured vertebrae. I'm wondering if I had a reaction to the contrast in combination with my extremely low potassium.

Well, tomorrow they are doing a 48 EEG. I just finished the long MRI of the entire spine and brain. Hopefully, we'll know something soon.

That sounds like it could be a possibility, too. Lots of possibilities. (Remember me posting that my own oncologist’s favorite saying was, “Stranger things have happened!”) Glad you are on a heart monitor and having an EEG. Sounds like you are in good hands. Hang in there.

 

[ZellyB]

Peg I'm So sorry to read this update. It would definitely seem that a second opinion is in order. I'd be furious about the delay from your oncologist and that you basically had to track him down to get him to tell you what was going on. Especially given that you are hospitalized. You have my prayers that the newest scans are interpreted differently and with a better outcome.

 

[ZellyB]

I did have some good news to share for me, although Peg's post is definitely a reminder that things can change quickly when dealing with this metastatic beast.

I had my regular 3 month CT and bone scan last week and went in to see my oncologist today for my regular check before treatment. My scans show stable disease with no progression. So, for me, that's great news. I'm currently taking a drug with just once a month infusions which I tolerate pretty well. Minimal side-effects and just lots of fatigue and crummy feeling for about 2 weeks post treatment. That means I get 2 weeks a month where I feel decent, and I'll take that! My white count finally got low enough that he decided to give me Neulasta for the first time so hopefully that boosts my white cells enough to avoid secondary infections. I also got a third shot of the COVID vaccine since that was approved for those who are immunosuppressed. We've had a huge surge of the Delta variant here so this added some peace of mind for me. Cancer remains limited to my bones at present with no changes in soft tissue or lymph nodes. My oncologist already has my next treatment ready to go, sacituzumab govitecan. I read up on it and it's a fairly recently approved drug for mTNBC (2020), and the results for it are good for median progression-free survival vs traditional chemotherapy, so I'm glad to know it's in the wings for me. He tells me there's another he can also go to after that one, so that's the game we play right now in beating back the beast always hoping for another new and more effective treatment to arrive. For now, I am enjoying knowing that things are stable and I'm blessed with more time to spend with my family.

 

[Pea-n-Me]

I did have some good news to share for me, although Peg's post is definitely a reminder that things can change quickly when dealing with this metastatic beast.

I had my regular 3 month CT and bone scan last week and went in to see my oncologist today for my regular check before treatment. My scans show stable disease with no progression. So, for me, that's great news. I'm currently taking a drug with just once a month infusions which I tolerate pretty well. Minimal side-effects and just lots of fatigue and crummy feeling for about 2 weeks post treatment. That means I get 2 weeks a month where I feel decent, and I'll take that! My white count finally got low enough that he decided to give me Neulasta for the first time so hopefully that boosts my white cells enough to avoid secondary infections. I also got a third shot of the COVID vaccine since that was approved for those who are immunosuppressed. We've had a huge surge of the Delta variant here so this added some peace of mind for me. Cancer remains limited to my bones at present with no changes in soft tissue or lymph nodes. My oncologist already has my next treatment ready to go, sacituzumab govitecan. I read up on it and it's a fairly recently approved drug for mTNBC (2020), and the results for it are good for median progression-free survival vs traditional chemotherapy, so I'm glad to know it's in the wings for me. He tells me there's another he can also go to after that one, so that's the game we play right now in beating back the beast always hoping for another new and more effective treatment to arrive. For now, I am enjoying knowing that things are stable and I'm blessed with more time to spend with my family.

Very good news, Zelly! I’m glad you have a good treatment plan in place and you are feeling pretty well at least some of the time. I’m always glad to read about new treatments. Prayers for you, too, and for all of us here. Appreciate the update. Stay well.

 

[Dan Murphy]

I did have some good news to share for me, although Peg's post is definitely a reminder that things can change quickly when dealing with this metastatic beast.

I had my regular 3 month CT and bone scan last week and went in to see my oncologist today for my regular check before treatment. My scans show stable disease with no progression. So, for me, that's great news. I'm currently taking a drug with just once a month infusions which I tolerate pretty well. Minimal side-effects and just lots of fatigue and crummy feeling for about 2 weeks post treatment. That means I get 2 weeks a month where I feel decent, and I'll take that! My white count finally got low enough that he decided to give me Neulasta for the first time so hopefully that boosts my white cells enough to avoid secondary infections. I also got a third shot of the COVID vaccine since that was approved for those who are immunosuppressed. We've had a huge surge of the Delta variant here so this added some peace of mind for me. Cancer remains limited to my bones at present with no changes in soft tissue or lymph nodes. My oncologist already has my next treatment ready to go, sacituzumab govitecan. I read up on it and it's a fairly recently approved drug for mTNBC (2020), and the results for it are good for median progression-free survival vs traditional chemotherapy, so I'm glad to know it's in the wings for me. He tells me there's another he can also go to after that one, so that's the game we play right now in beating back the beast always hoping for another new and more effective treatment to arrive. For now, I am enjoying knowing that things are stable and I'm blessed with more time to spend with my family.

Great update, Zelly!

 

[Grace&Carolinesmom]

Peg--I am so sad to read your news. The frustration of conflicting information from multiple doctors and the less than timely attention from your oncologist is troubling as well. I pray that a second opinion will result in more complete and encouraging news. My thoughts and prayers are with you.

 

[Grace&Carolinesmom]

Zelly-- Glad to hear you are hanging in there with a positive attitude even though the meds are making you feel crappy. At least they are keeping the cancer in check and you have some warriors waiting in the wings if the current meds falter.