Dis Breast Cancer Survivors Part IV - GAGWTA

[Feralpeg]

Thank you, ladies. JuneChickie, hearing your story really helped. Kendall is doubting herself. The doctor actually suggested it might be a cry for attention. I assure you, it isn't. Hearing how long it took you to find answers made her feel much better.

 

[Dan Murphy]

Well, I am beyond frustrated and so sad. I know this is a thread for those experiencing cancer, but I consider you all friends and I really need to vent.

I took Kendall to the neurologist this morning. Over the past month, she had a complete blood workup, another brain MRI, a spinal tap, an EEG and an EMG. We went in, this morning, thinking we'd finally have an answer. Nope! He hasn't a clue what's wrong with her. As far as he is concerned, she has no neurological issues. He has no explanation as to why she has a severe tremor on her right side and can hardly walk. He admits that the majority of her symptoms point to MS, but he won't diagnose it because she does not have the classic lesions and they did not find any evidence of sheath breakdown in her spinal fluid. He also said that he has ruled out Lyme Disease and Wilson's Disease.

It broke my heart when Kendall broke down and begin sobbing in the neurologist's office. I had a really hard time holding it together. For me, this was much worse than when I was diagnosed with cancer. I had an answer and could make informed decisions. She has nothing!

I asked the neurologist where he would suggest we go from here. He suggested we see another rheumatologist. He wrote down fibromyalgia as a diagnosis and said to call him if we ever needed something. Frustrating! She was treated by a rheumatologist for several years for fibro and then told, as her symptoms became severe, that it was neurological.

So, here we are again. No answers. Kendall's symptoms continue to worsen. I will take her to another rheumatologist, but I am also making an appointment at Mayo Clinic in Jacksonville. There are so many auto immune illnesses, but they only seem to test for the obvious ones they see the most. Where is Dr. House when you need him?

Thanks for letting me vent!f

Feeling so badly for Kendall, and you also, Peggy. 's Not knowing a diagnosis is always such a concern. It's good that Mayo is within reasonable driving distance to you. And glad to hear you are going with that option. Prayers are with Kendall, and you too.

 

[luvmarypoppins]

MiGrandma - thinking of your dd
rajak- hope you had a great trip
Laurie- hope your dd's move went well and that you enjoy your ny and fl trips
Peg -I am sorry that Kendall still does not have answers. I agree about going to Mayo. Ds 2 friend is an internal med dr. at Mayo Rochester. They are the best. Wishing Kendall all the best and peace for you both.

I got the one tooth pulled. Now I have a gaping hole in my gum, sigh. Hopefully we will have more sun and less rain here.

GAGWTA. Thinking of you all.

 

[Dancind]

Goofy4Tink, I was kind of the same way. Didn't want a fuss, didn't tell many people. I do remember one breakdown, on my birthday, first diagnosis.

Peg, sorry to hear Kendall is still sick and hope she gets an answer somehow. My autoimmune issues took years and I figured them out myself (exposure to jet fuel in drinking water at work). And my niece finally got an answer, she had developed an allergy to mold! A holistic doctor helped her figure it out, and she's getting better. She was exposed while in art school in Baltimore. She was sure it was Lyme disease too. I know you won't give up, just consider that the answer may not come from a regular medical doctor.

 

[smiley_face2]

Hi there all! just popping my head in to say hello! read the last few pages, saw some new faces! I said a prayer for each one of you and what you are going through, whether yourself or family. Peg, yes, having had a sick child, I would gladly have gone through cancer again myself to take away her pain. big hug for you.
Life is full of ups and downs, we haven't been to Disneyland for a year and half now, and I am itching to go again! we have a tentative trip planned for november, but going depends on how our daughter does, and if I can save up the money by then!
We have our dear son's oldest girl staying with us for the summer, working her first ever job! she is 15 now. Completely not able to wrap my head around the fact she was only 7 when our son died. We still miss him just as much as always.
Hi Diana! good to see you
GAGWTA

 

[Feralpeg]

Hey, ladies! Question. Have any of you ever had your cancer markers go up and it turn out to be nothing? I went in for my regular checkup at the oncologist about two weeks ago. They called me to say I need to have more blood work as my cancer markers were up. I repeated the test. The second results were the same.

Today, they called to tell me I need a pet scan. That will happen on Monday. I will find out the results on August 26th.

I am hoping against hope that it is all a mistake and that they find nothing. I doubt they'd be having me do the pet scan unless they thought there was something there. Just not looking forward to the idea of facing this beast again.

On a brighter note, Kendall seems to be experiencing a small remission of whatever she has. Her tremors have lessened and she is feeling a little bit better. The new rheumatologist ordered a ton of tests she's not had in the past. We will get the results on September 16th. Fingers crossed they have something for us!

And, in the midst of all this, I'm having cataract surgery. They will do the first eye tomorrow and the other on September 3rd. At least I'll be able to see what's ahead!!!

 

[luvmarypoppins]

Peg - sorry you are having to go through all of this. My blood markers couldn't/can't be used so hence the pet scan for my recurrence. I am glad they are being thorough with you. The waiting is the worst. They can actually see if you light up right away. I think I asked my dr. to call me asap.
Wishing you all the best and that your cataract surgery goes well.
Glad to hear Kendall is feeling a little better.
Sending you good thoughts and prayers.

 

[Pea-n-Me]

Hey, ladies! Question. Have any of you ever had your cancer markers go up and it turn out to be nothing? I went in for my regular checkup at the oncologist about two weeks ago. They called me to say I need to have more blood work as my cancer markers were up. I repeated the test. The second results were the same.

Today, they called to tell me I need a pet scan. That will happen on Monday. I will find out the results on August 26th.

I am hoping against hope that it is all a mistake and that they find nothing. I doubt they'd be having me do the pet scan unless they thought there was something there. Just not looking forward to the idea of facing this beast again.

On a brighter note, Kendall seems to be experiencing a small remission of whatever she has. Her tremors have lessened and she is feeling a little bit better. The new rheumatologist ordered a ton of tests she's not had in the past. We will get the results on September 16th. Fingers crossed they have something for us!

And, in the midst of all this, I'm having cataract surgery. They will do the first eye tomorrow and the other on September 3rd. At least I'll be able to see what's ahead!!!

Sorry to hear that, Peg. I don't have any routine cancer markers drawn. Initially I did, with my first oncologist, but after she retired I got a younger oncologist and she said they don't draw them because studies have shown that they cause a lot of anxiety and false positives and ultimately don't improve survival rates. It took a little while to get used to the idea but I did, and suppose it's just as well. I don't know how it works for other posters where they go. Will say prayers for you. I'm glad Kendall is doing better. Hang in there.

 

[Feralpeg]

Hello, all! Well, good and bad news. I saw the oncologist today to get the results on my PET scan. The scan revealed cancer in several lymph nodes in my upper chest. The largest is 2.5 cm on the left side of my heart. The good news is that they found nothing in any of my organs!

The next step is a biopsy. They need to make sure it is really breast cancer, which they believe it is, or another cancer. If it is breast cancer, I will take an oral chemotherapy medication. If it is another type of cancer, no idea. They really think it is breast cancer.

They seemed pretty positive that we caught it early and it can be managed. I say managed, because I believe this will be an ongoing issue for me for the rest of my life. We will beat it down and keep an eye on it, but it seems to be quite resilient. I can live with this!

They didn't go into any side effects to expect yet. After doing a little research, it seems they are similar to the IV chemo side effects, just more convenient. Not something I'm looking forward to, but I'll take things one day at a time.

Hope you're all doing well! Happy Labor Day!

 

[Pea-n-Me]

Hello, all! Well, good and bad news. I saw the oncologist today to get the results on my PET scan. The scan revealed cancer in several lymph nodes in my upper chest. The largest is 2.5 cm on the left side of my heart. The good news is that they found nothing in any of my organs!

The next step is a biopsy. They need to make sure it is really breast cancer, which they believe it is, or another cancer. If it is breast cancer, I will take an oral chemotherapy medication. If it is another type of cancer, no idea. They really think it is breast cancer.

They seemed pretty positive that we caught it early and it can be managed. I say managed, because I believe this will be an ongoing issue for me for the rest of my life. We will beat it down and keep an eye on it, but it seems to be quite resilient. I can live with this!

They didn't go into any side effects to expect yet. After doing a little research, it seems they are similar to the IV chemo side effects, just more convenient. Not something I'm looking forward to, but I'll take things one day at a time.

Hope you're all doing well! Happy Labor Day!

I’m sorry to hear this, Peg, but glad those were the only spots. Is it possible that they are reactive nodes to something like an infection?

 

[Feralpeg]

I’m sorry to hear this, Peg, but glad those were the only spots. Is it possible that they are reactive nodes to something like an infection?

No. I wish they were.

 

[luvmarypoppins]

Peg, I am so sorry you have to go through this yet again. It was good to hear it's not in any organs. Sounds like your care team has a good treatment plan on place. My thoughts and prayers are with you.

 

[luvmarypoppins]

Peg - thinking of you and wishing you all the best

hope everyone is doing well.

my dil is in the hospital. They are checking things out.
Going for my sono friday. Then 2 more tests to go.
We watched our grand puppy Austen, the King Cavalier. He is cute but a handful at 4 1/2 months

GAGWTA

 

[Pea-n-Me]

Also wondering how Peg is doing!

I hope things go well with your DIL, lmp.

 

[Feralpeg]

Hi, Ladies! Well, things are moving slow. Not necessarily a good thing. It turned out that the majority of the lymph nodes lit up by the PET are in my right neck. One is just to the left of my heart. The radiologist decided he couldn't do the biopsy, so I am scheduled for 9/19 to have the biopsy done by a thoracic surgeon. He will insert a probe down my throat. It will have a small sonogram thing to locate the node. Once the node is found, a needle will pierce my throat and take a biopsy of the node. Not looking forward to it, but want to move things along. Now that I know it's there, I feel like I'm walking around with a time bomb in my chest. I don't want it to spread to any organs.

Once the biopsy is complete, I will be scheduled with the oncologist to start treatment. Of course, things would have moved along quicker if not for a holiday and a hurricane! Thanks, Dorian! It could have been much worse!

On the bright side, I was able to complete the cataract surgery on both eyes!

On 9/26, I take Kendall back to the new rheumatologist to get the results of the tests ordered. Trying not to get our hopes up, but praying for something! I would so like to know what is going on with Kendall and get her on a treatment just in case things don't go well for me.

Hope you are all doing well!

 

[snappy]

Thanks for posting, Peg. You and Kendall are in my prayers.

Hope your DIL is ok, LMP. And good luck with your tests.

My husband and I returned last week from a bucket list trip (for us anyway) to Utah and Colorado. Did a 3 day guided rafting trip on the Colorado River. We had a blast as the guides were great, informative, cooked and served great meals. Also, the rafting trip was in connection with the Moab music festival so we had 3 fantastic musicians traveling the river with us and we heard a lot of wonderful traditional Venezuelan music, as well as some of their original compositions. It was music in the landscape. Wonderful! However, sleeping on a tent and hiking to a grotto experiences were not so wonderful! I figured out I like nice hotel rooms. Seeing the various canyons from the vantage point of being on the river was unforgettable. Glad I did it.

Otherwise all is well, DH is back to following his heart healthy diet and we are both doing some PT for minor issues. You know you are old when you are relieved to get back to your own bathroom and bed.

 

[Feralpeg]

Good news on two fronts! I got the results back from my biopsy. The cancer is exactly the same as the past two times. I will start taking Ibrance and a hormone treatment. I will take the Ibrance for 21 days followed by 7 days off. The oncologist said this would go on for six months. She says I should be in remission by then. I will take the hormone treatment for the rest of my life. The side effects are much less extreme than the IV chemo. The biggest issue is low blood cell counts. They will monitor me closely for this.

I am a bit concerned over the possible cost. Without insurance, 21 pills of Ibrance costs $13,200. Crazy! I have both medicare and a supplement plan, so I'm hoping the copay isn't insane. There are plans to help if needed. I just hope I don't have to go that route. I am waiting for the call from the specialty pharmacy. Hope to start treatment by the second week of October.

The other good news is about Kendall. As you know, we've been tossed back and forth between doctors. First, they thought it was fibromyalgia. When she started having tremors, the rheumatologist tossed out fibromyalgia. The rheumatologist said it definitely wasn't lupus and sent us to a neurologist to test for MS. The neurologist ruled out MS and told us to see another rheumatologist. The new rheumatologist ran every test known to medical science. Guess what! It's lupus! The other rheumatologist insisted it wasn't lupus based on one test. Crazy! Anyway, the doctor is doing additional blood work, but Kendall will begin treatment for lupus the middle of November.

Needless to say, my faith in the medical world is not great, but I am really hoping the treatment gives Kendall some relief. It's about time she caught a break.

So, all in all, things are going better than expected for us. To celebrate, Kendall and I are going to MNSSHP tonight! Boo to You!!!

 

[Pea-n-Me]

Good news on two fronts! I got the results back from my biopsy. The cancer is exactly the same as the past two times. I will start taking Ibrance and a hormone treatment. I will take the Ibrance for 21 days followed by 7 days off. The oncologist said this would go on for six months. She says I should be in remission by then. I will take the hormone treatment for the rest of my life. The side effects are much less extreme than the IV chemo. The biggest issue is low blood cell counts. They will monitor me closely for this.

I am a bit concerned over the possible cost. Without insurance, 21 pills of Ibrance costs $13,200. Crazy! I have both medicare and a supplement plan, so I'm hoping the copay isn't insane. There are plans to help if needed. I just hope I don't have to go that route. I am waiting for the call from the specialty pharmacy. Hope to start treatment by the second week of October.

The other good news is about Kendall. As you know, we've been tossed back and forth between doctors. First, they thought it was fibromyalgia. When she started having tremors, the rheumatologist tossed out fibromyalgia. The rheumatologist said it definitely wasn't lupus and sent us to a neurologist to test for MS. The neurologist ruled out MS and told us to see another rheumatologist. The new rheumatologist ran every test known to medical science. Guess what! It's lupus! The other rheumatologist insisted it wasn't lupus based on one test. Crazy! Anyway, the doctor is doing additional blood work, but Kendall will begin treatment for lupus the middle of November.

Needless to say, my faith in the medical world is not great, but I am really hoping the treatment gives Kendall some relief. It's about time she caught a break.

So, all in all, things are going better than expected for us. To celebrate, Kendall and I are going to MNSSHP tonight! Boo to You!!!

I am happy for your good news! So glad things are treatable for both you and Kendall! Love that you're celebrating at MNSSHP!! Will keep my fingers crossed that treatment is affordable for you.

 

[Dan Murphy]

Boo to you too, Peggy, and Kendall also. Please accept a cyber hug from me for you both. 's

Good to hear your preferable diagnosis, Peggy. And for Kendall, good to hear maybe moving in the right direction, finally. Can't do anything without a diagnosis, and a correct one.

As you said, good news on two fronts.

Enjoy the party, have a cider for me.

 

[luvmarypoppins]

Peg - so great to hear the good news about you and Kendall! Glad you both have good treatment plans going forward. Have a wonderful time at the party tonight. I know you've said before it's one celebration you enjoy.

Laurie - sounds like you've had some great trips too.

My dil is still having issues. I wish she would see better doctors.
I have done the sono and blood tests. Dexa scan on Monday at a different place. When I called to make the appointment the original place told me they were closing that office. I also got my mammograms there so next year I will have to pick a new place. I loved the tech there, always so patient and kind.

Ds1 and the puppy are coming over sun. The dog loves dh the most.
GAGWTA. Have a great weekend everyone.