The Hermit Club

Leslie,  ditto Jazzy.  Welcome...

Camille, Joey's sunburn healing?  Poor little guy.  Our school nurse puts wet sponges in ziploc bags and puts them in the fridge...  Cools things and won't drip all over...

Laurie, Hope the pm went through.  Sorry it's not all straightforward.  (and I just thought a hospital was a hospital.  I learned something new since I hadn't given it much thought.) 

Rest well, all.     

Laurie- I hope you are doing better today. I re-read your entry about the bad visit with the MO and a couple other things I wanted to share. 

The Oncotype test is a gene panel test and the results are a score that usually fall into a low, med, high range. Those on the low spectrum never receive chemo, those on the high end usually do. For those in the middle, there are no clear known benefits known for chemo treatment at this time (a ongoing trial called Taylor X that should tell more in the next year or so). I had the test on both sides (IDC and DCIS) and that helped my doctors to determine my remaining treatment. It was recommended I do AI for five years and my risk was going to come down from 15-10%. That was good enough for me.

As mentioned, they did do the Oncotype on the DCIS. And just make sure you get the authorization from your insurance company as some are funny about paying for this test (even with the auth). Make sure you know if they expect you to pay the balance on anything the insurance does not pay. I share this with you as I was originally told they would not bill me for anything residual, but my insurance co only paid half on it and now we are going through multiple appeal processes. The test costs around $4500. 

Hope this helps for your next conversations around the oncotype test with the next MO. I think the information from the test is valuable. Information is power. 

Skittle-I did receive the PM. Thank you so much. I replied. Have a lovely day.



Jazzy-this is excellent information! Thank you so very much. I am learning as I go through this thread of things I need to look for. I am also on the lumpectomy thread and so I have learned a lot there as well. One of the things that dawned on me was the daily radiation treatments. It occurred to me that maybe I would be charged a copay for every single visit. So I decided to call the billing office at the radiology oncologist. And I found out that that is the truth. So it will cost me about $300 a week in co pays for the radiation treatments. They think I will have radiation for about a month. It is what it is, but nobody ever tells you these things along the way. I like to have all my ducks in a row and know what I am being faced with. If we were not our own advocate, we would be so lost. Thanks to all of you for all of your advice and support. As I tell everyone I come in contact with, all of you have been a Godsend to me.



in other news, I am feeling a bit better day by day. I have been doing my pool therapy, and I feel that that is helping. Last night I did a little bit of yoga as well. I feel like all the sitting around is not helping so if I am able to do little movements and exercises I need to start. We find out the sex of my daughter's baby on Monday, and I'm really excited about that. I am sticking with my theory that is it is a girl. People keep telling me because she's carrying out front, that its a boy. I tend to go with that theory for most people, but I still think that is a girl. Its just a gut feeling. We are so excited to find out and I will let you all know.

Last night in Huntington Beach, our team was winning 6 to 2. Our pitcher started to lose it and ended up with bases loaded. They brought my son in to close the game. He typically does not close. Unfortunately things did not go well and they ended up catching up and the game ended in a tie. My husband was texting me every single pitch. It was pure torture. There were so many times that my husband said that the pitch was a strike, but the umpire called it a ball. He said the entire team was in an uproar about it. However, that being said, Nick was still the losing pitcher. The way people see it, it is the final pitcher that is responsible for the loss of the game. That is a hard pill to swallow, but that is life. You cannot know success without failure. They are still doing very well in the tournament and have another game today.

I hope you always sunburn is better. Paige got really sunburned when she went to Sea World a few days ago too and being pregnant that was not good. She said she was using 50 sunblock and applying at every hour, but it still happened. It can be a very bad thing. I hope he feels better.

well I am going to get into the pool before it gets too sunny outside. Wishing you all a blessed and wonderful day. Hugs and kisses,

Laurie

CC(Badger?)--welcome, and hugs.  Each hermit helps in different ways.  Humor, hope, wisdom.  They have all helped me so much.

Laurie--my older daughter is a hospital admin fount of wisdom.  I am sorry that I didn't know how to answer her questions so she could help you more...  (She now works for the Surgeon General in AR, and is just settling in.)  Happy, happy excitement looking forward to baby news.  Sad to hear of the pitch/loss, but I'm sure he knows he did the best he could and has many great games ahead.

Jazzy, Jinkala--My oncotype is 19 and the MO did not put me in for chemo.  He did a LOT of statistical analysis, and found it would make a 1% difference for me.  (I have a weird type of bc, and am usually a guinea pig.)

Ooops.  Dh calling.   Hugs to you all.  Happy minions tomorrow, if anyone's going!

Hi ladies- we are finally getting some rain here in NM! Monsoons have started and there is some rain around every day somewhere. Looks like my yard got some today too!

Laurie-glad the info helped. The unexpected part of this is the financial cost for things. I went through some initial shocks around co-pays and out of pocket for all the tests. Then I learned to ask a lot more questions up front about my part of the costs so I could make an informed choice. It sounds like you found out some good information about the cost for your rad treatments. Know most any place can set you up on payment plans, even for co-pays, if you need to do that.

CC-welcome to the Hermits thread!

Jink-yes, I believe the Oncotype is for early bc that is estrogen positive. My sister is HER 2 positive like you are and did not have the test either. Like you, she is also getting the herception treatments. I hope the heat out your way is better. It has been a tough couple weeks out west!

Happy almost July 4th my hermit peeps!

Dwill- thanks for joining us here! Glad you to got to visit family, but sorry they don't understand better. We all have had similar experiences with family and friends, and we get tired of explaining ourselves, so we retreat. There is a lot to be said for hermitage.

I am glad for you that you felt you could say no to them when you were not feeling well, so you could take care of yourself. I hope you enjoy getting settled back into your home. Let us know how you are doing as you would like to.

CCFW-- I think TE means tissue expanders. I haven't had any bad dreams about any of my doctors, but I have had more than a few nightmares in general. With the amount of stress & anxiety we endure, it is normal to have bad dreams (or so I'm told!). You like your doctor, maybe you should mention the dreams to her? Try not to feel bad, it is not your fault that you're experiencing this!

Oldies & Newbies,

This will be the 2nd Fourth of July for this fun & kind thread!

DW and that is fine...I llike being alone also, take care of yours....

HUGS TO ALL OF YOU HOPE YOU HAVE A WONDERFUL 4TH

ME...went for chemo, temp was up, well have bronchitis, they gave me chemo but stopped it cause my oxygen level kept coming down cause I can't breathe, walked to the bathroom and came back and it was 73 (that was the lowest) so they put me on oxygen I sat, the dr. gave me a z pack cause he is afraid of pneumonia, whatever got 1/2 taxotere, will be better soon....AND I am getting a PET scan which I have been asking for for months, haven't had one since 2009.....so will get one before I see him again on the 31st which is after my week off which is when I will get it...

BBL xoxoxoxoxox

blondie... hugs and hopes for good news on PET.  Must be a bit scary not being able to breathe.  (dh has asthma, and it scares me when "episodes" occur.)

Camille...  our furry ones react the same way.  The 4th is their least favorite holiday with all the fireworks around. 

Teka... are you an original hermit?  Since the start of the thread?  When you mentioned second 4th, made me wonder.

Jazzy, dwill, all...  Hope your fourth went well, and the weekend is kind.

November, I joined this thread.

blondiex46,

I'm so pleased you're having a PET scan.

Then comes the wait.

But we'll be here!

Blondie, sorry you aren't feeling well. Sending you peaceful thoughts for the PET tomorrow!



Lily, funny how those little pills cause so many problems, right? Not funny haha, but scratch your head funny.



Camille hope everything is going well for you! Still home alone?



Teka, I think I started around the Olympics last year. Camille is the last of the originals.



Hope everyone has a great weekend! I think it is going to keep up the rain here

Markat I think I am one of the original members of this--shows u how far I',ve gone. Obviously I haven't moved on. But I like the gals on here and altho I'm not the hermit I was I still like to be alone so that's how I am, but like I've said I met a lot of nice people on this thread and enjoy all of u and altho I don't know much about tsts, cancer or stuff, I know somethings and I throw in my own theories, since I think I know that. LOL

Blondie u'r having a heck of a time---Hope the pet goes well and u start feeling better.

And Jazzy I'm glad u have some time off--u need it to do whstever u feel like.

Lori1020,

I hope you're having a relaxing time out with family & kitten.