Anyone want to sit and wait with me?

Here is my contribution to the pool boy gallery.

Amica, Coleen, keep us posted.

Tomorrow is my first Taxol treatment and I am scared because I don't know how my body will react to it. My MO told me I have a sturdy constitution and I laughed like crazy. I am 45 years old and have already had 3 major surgeries and 2 minor ones. I guess I am sturdy, since I am still able to walk, talk, exercise, and admire the lovely men from afar. Let me know if you want the shirtless picture

---

Sending hugs to all.

Colleen, I am itching to ask the MO: if we were to address the her2 aspect, what would be the options? At this juncture, how would one reassess her2 status and her2 susceptibility to various agents? Is there a clinical trial that would allow access to some promising anti her2 agent that you are not otherwise eligible for?

Inna, I went thru 6 infusions of a similar drug, and made it, not without constantly and unabashedly asking questions about side effects. I highly recommend ksusan's Breathe page. Best to you, please let us know how it goes.

Some pool boy. Yes, a vote for shirtless

Colleen - Neratinib is available; however, many MOs are net yet prescribing it due to cost and the side effect of Grade 3 diarrhea. Sequencing the drugs is a problem, when to use what, because some are so new. However, it is another one to add to your bag after TDM-1 and /or Tykerb. The others are in trials.

Hey, as far as I am concerned, he can just walk around not doing anything, and it would still be enough

Question: My family doctor says she made my referral to a cancer center on July 19th. My appointment isn't until August 9. That is a three week delay. Seems like it should be much faster. Has anyone else had to wait that long for their first consult? I'm just wondering.

Of course this is in Ontario Canada; I am NOT impressed with the speed of healthcare access here

I have a 30 X 40 mm mass in a lymph node positive for breast cancer metastasis; it is a recurrence. It seems like it should be treated more urgently.

I am so anxious I don't know how I am going to wait 2 more weeks.

Amica

vampeyes

good idea. I'll call and see if I can get on a cancellation list. But wait, wasn't there a bad outcome with your stepdad, too long a wait, or am I getting that mixed up with someone else's account.

thankx,

Amica

How could a cancer clinic not do proper follow-up?! that's outrageous. I know patients need to be their own advocates but there should be Standard Operating Procedures in place to assure proper patient care and follow-up. Geez.

I haven't even gotten my full Pathology report yet, they said it could take up to a month or longer, I don't know hormone status or Her2, nor Grade. So slow. sigh. Let alone measures of tumor aggressiveness, S-phase or something, I don't even know if they do those tests in Ontario. probably cost too much.

A monthly parking pass for patients at Juravinski is over $200. At my previous cancer clinic in the U.S. parking for patients was 100 % free.

;(

Colleen,

I know how you feel. This waiting sucks big time. My stomach has been in knots all day. I spent the day shopping for all the things on my list for start of chemo, reading over instructions from Onc RN, trying to decide if I really want a wig or not. My brain is in BC overload. The closer I get to Tues(chemo), the more my emotions take over. I just want to be done & move on with old happy me. I will say it again ... The waiting just SUCKS!

I think I will get back to the lounge now for my cocktail & cabana boys. My brain needs a break! I also need a good laugh, so any good jokes out there.. bring them on ! 😙Cyn

Amica, I hope you got some sleep last night.Sorry the Ontario system is such a mixed blessing. How's dad doing, and would you be able to come to US for any testing that calls for longer waiting in ON.

Colleen l hope whichever MO is managing your care will follow you closely and competently, they owe you that. A lot of MOs do excessive delegating. Besides yoga and deep breathing, I had to practice some wheel-squeaking

These are hospital staff I recently dealt with:

Was the peanut assaulted with pepper spray...

Well, Colleen, I am glad the MO is a caring person, I hope she is also tops in competence. Mine too was on the dogmatic side and I had to assert myself to get answers and options I legitimately needed, and we ended up working well together.

You are not weird, you are an individual. What has me puzzled is, did they really follow the proper protocol in assessing response over time. Why was my MO testing for response just a month after tx initiation, and yours just waited for pathology report. Regardless, me at this point I would gently insist on knowing what is the plan for assessing tx response, how soon will they know if they are getting it this time. And are they conducting the best available tests to try to PREDICT response. (I am just thinking aloud, just in case any of this is of use in talking with her and/or anyone else.)

Sending a hug to you and your children and family. By the way, I hope your kids, and everyone elses kids, are enjoying the comfy den with bouncy pillows and childrens library in the new addition to the clubhouse

Coleen, mastectomy is not that scary, I swear. I insisted on it when my MO asked if I wanted a lumpectomy, and I gave her my reasons. Thankfully, she didn’t argue with me. I am happy with my decision because surgical pathology determined that I had lymphovascular invasion, just the beginning of it, but still. If i did go with lumpectomy, I’d have to do a mastectomy anyway. Don’t worry, it’ll be ok.


In other news, I didn’t end up having my first Taxol today because my 2 viable veins got damaged by the AC, and after being stuck 3 times with no blood, I was sent home for the weekend to drink a lot of water (since wine is out of limits for now) and wait for another try on Monday. If it will be unsuccessful again, I’ll have to do a port. I was so upset, I cried like a damn baby. It took a lot of mental preparation for this day, and now I get to take 10 dexamethazone pills again on Sunday and do it all over on Monday. So, looking forward to that now.

Here’s how I coped with it: had a bowl of pelmeni (ukrainian meat dumplings), which I do Only in case of emergencies and rewatched The Wedding episode of Outlander, which i consider the ultimate escape from reality. I highly recommend both.

Hi Oxygen18

How are you doing?

as per: "How's dad doing, and would you be able to come to US for any testing that calls for longer waiting in ON."

I feel sorry for my Dad. He's 94 and I am in Ontario so that he doesn't have to live alone, he has some health problems. And now I am sick. We don't have extended family.

Tests take longer in Canada, but I would hope eventually they will get done. I have partial pathology results, they said the rest will take a month or more. Since my last go round at this was 20 years ago, I don't know if tests have gotten more complicated and take longer now, or is it just Ontario. I would have to pay out-of-pocket in the U.S.

The wait for my initial oncology appointment on August 9 seems like an ETERNITY.

take care,

Amica

"Our study suggested that the HER2-positive HR-positive patients had a good prognosis despite the lower achievement rate of pCR, whose prognostic impact was smaller than that in the HER2-positive HR-negative patients"

From: Pathologic complete response after neoadjuvant chemotherapy in HER2-overexpressing breast cancer according to hormonal receptor status
Tanioka, Minami, 2014

The above, Colleen, sounds hopeful.

Great idea to work with a psychologist.

I hope the process of pulling teeth, er, extracting info from the MOs, becomes easier.

Sending love and hope to you and family.

Hi, everyone.

I am very new to my diagnosis-tomorrow will be a week from receiving the call.

I did see my surgeon on Wednesday. I have IDC; grade 2. Yesterday I had a breast MRI. We are waiting for genetic testing. ER+/PR+ Her2-; and looks like not spread to nodes.

I am leaning on a lumpectomy with rads. ??

ColleenS80

I hope you get some some clarification from your MO about those confusing results.

I am not good at coping, I did fine the first time I had breast cancer 20 years ago, but this recurrence has left me devastated. I take Xanax and sleep as much as possible haha. All that healthy lifestyle stuff can go to hell, I had a very healthy lifestyle, it never made any difference.

Cannot even get a therapist in Canada, several months of wait times just to see one, very few are taking on new clients, and you have to pay-out-of-pocket.

with love and compassion for all of my fellow ladies in waiting,

Amica