Anyone want to sit and wait with me?

InnaB2018

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

---

KK2018

InnaB-drooling over Sam! Not sure when season 4 comes out (I think this November) but I’m sure it will make my chemo easier! Good luck tomorrow!

Scheduled my chest/abdomen CT and bone scan. And pre-surgical blood work and Breast Pre-Op class. So much testing and waiting. I wish I could have spent the next week trying to salvage a bit of summer fun with the kids, but this is just the new normal now. We will just have to squeeze ice cream and pool time and back to school shopping in between the cancer craziness.

oxygen18

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

MiCyn

InnaB.....Good luck tomorrow!!!!! 🤗

You all made my day ! I came home to find all these beautiful Bods! Wow, and I don't even swim! Went to chemo class today, and it really helped calm many of my fears. Onc RN told me to take anxiety med night before 1st chemo so I can get decent sleep, & can also take it the AM chemo day. I'm not much on taking meds, but I have it if needed. I went to the monthly support group after & SO glad I did. The social worker that leads the group is 17yr survivor. She was triple negative. Another lady in her 80s who was stage 3, just passed the 5yr mark. Made me feel extremely hopeful. Cyn

Becca953

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.

Amica

.....he speaks only French... doesn't know how to make a cocktail...and he won't carry towels...but, umm..that's OK

InnaB2018

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

Amica

as per InnaB2018 " Hey, as far as I am concerned, he can just walk around not doing anything, and it would still be enough"

Well that's what he does...plus works on his hair a lot, avec plaisir...

Amica

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

Amica - the 3 weeks sounds quite right for Ontario! I remember it taking quite a long time to get the ball rolling for my step dad. Can you call and ask them to put you on the cancellation list? P.S. That boy must take forever to do that hair and the product he must use! lol

Susan - Your right, we should have both pool boys and girls, it would be sexist if we didn't for one thing and of course the eye candy for those who would enjoy it as well. Mind you with all us sexy women lounging around there may already be enough eye candy.

InnaB - thinking of you today - good luck, hoping all goes quick and goes well.

Cin - good luck with your first day whenever it may be. Will be thinking of you.

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

vampeyes

Nope, your right - he's gone and went fast. His cancer was diagnosed a few years ago, the cancer clinic didn't follow up with him after his treatments - said he was all good. He obviously wasn't and once the chemo was out of his system it started to grow again. It's possible the chemo he did finally receive this time around made it worse. He had a very fast growing cancer and gene related. His dad lived to 72 with it, a cousin only made it into his 50s and an uncle into his 60s.

Welcome to Ontario! hahahahahaha. I do have to say that when I asked my RO for a referral to a new MO in London, I was called by the doctor regarding my lungs and told it would be a minimum 3 weeks before they could fit me in due to the amount of patients. I got in about two weeks later.

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.

;(

ColleenS80

Becca,

My dr does plan to do nerlynx (sp?) after I finish herceptin/perjeta. I was under the impression that kadcyla was only available for stage four bc...is that correct?

Hope you ladies are doing well today. I can’t shake the anxiety. I wake up every morning and feel like you do when you’re grieving...a moment where everything’s fine, and then reality hits you. And you feel a crushing weight on your gut and then that’s how I feel the rest of the day. Anxious and scared. Can hardly get out of bed. So sick of feeling this way. Getting ready to set up seeing a therapist. I can’t do it alone! You ladies have been my therapist thus far and I’m so thankful.

MiCyn

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

ColleenS80, I feel for you. I too am so anxious and scared. It is nearly intolerable. And right now these boards are all I have also.

Standing with you in loving support,

Amica

oxygen18

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:

ColleenS80

Cyn, I remember being equally anxious about beginning chemo. I will tell you, the silver lining for me were my chemo nurses. Angels from God, I tell you! Took such good care of me and were so kind. I’m praying you get equally awesome nurses to get you through. Please let me know if there are any chemo questions I can help you with...I did it from 2/8 until 6/21!

Amica, thank you so much and I am thinking of you and praying for you as well as you wait. I wish we didn’t have to be here.

Oxygen, I really do like my MO. Some examples: she callled me personally after she spoke with her colleague at Vanderbilt to go over things with me, told me she was worried about me and asked if I had my counselor figured out yet. Also, the office staff set me up with an NP for my post-surgery check. While I was in the room waiting, the MO’s nurse came in and said “there’s been a change of plans. MO is going to see you instead..” she came in a bit later and was piping mad that the office staff set me up with the NP and not her. I heard her complain to more than one person and she said if they tried that again to tell them to double book her if they needed to but I needed to see HER.

The down side is, she’s very confident and not really open to when I question things. Im really gonna fight to get my pathology re-tested though. I just think it’s too weird. Grade 1 and HER2 of 3+? Weird. HER2 of 3+ and Ki67 of only 5-7%? Weird. NO response to herceptin/perjeta? Weird. Maybe I’m just weird in general but it’s enough that I want it re-checked.

And now for a joke. My favorite corny one:

Two peanuts were walking down the street. One was assaulted.

oxygen18

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

oxygen18

Cyn, I was on Taxotere, one suggestion is Cold Caps for hair. I d try it even if it is of partial effectiveness. Take care.

InnaB2018

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.

Amica

Oh InnaB2018

I am so sorry. As if it wasn't bad enough to be all braced and ready for the chemo and then they could not do it. I have had that happen too, and it is so disheartening.

Sending you hugs and more hugs, and hope things go better on Monday.

Amica

Amica

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

ColleenS80

Good afternoon ladies! Hope all are well today.

Oxygen, I do believe it’s standard in my case (triple positive) to do the neoadjuvant treatments and then wait to reassess after finishing those. However if someone knows different please share! I had an MRI before surgery that said the tumor had shrunk a little, from 1.4 to 1.1 cm. However once extracted the tumor still measured 1.4. I still have questions...two scan reports mentioned a satellite nodule off my original tumor, and the one right before surgery said it looked to have resolved. But, post surgery path said nothing about that. So...did I have a response or not?!?! I plan to print out each MRI and compare to ask my MO at next apt.

Inna, thanks for the mast advice and I’m so sorry you didn’t get to do your chemo. It’s so hard when you’re mentally prepared for something and then it changes. I hope everything works better tomorrow. However, if you need a port, don’t be worried. Once I had mine I was so glad to have it. Makes infusions a breeze and not painful.

Amica, how are doing with “the wait”? Hope you are finding ways to cope.

I have an appointment with a therapist Friday. I am so looking forward to an outside ear and someone who can hopefully help me cope. I’m sick of feeling so unstable, and angry at how it must be affecting my husband and children. I just can’t seem to stop myself from thinking very negatively right now, which is not like me at all. I look at one of my kids and get choked up thinking I won’t be here to raise them. Then I just start crying. I have got to get pst this!! As my husband said, what if it did become worst case scenario? Better to be spending wonderful time with them right now than to be all sadness and their last memories to be of me lying on the couch. Just need some help to get back to a better place mentally.

oxygen18

"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.

ColleenS80

Thanks oxygen, that is hopeful! <

debmom70

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

Hi debmom! So sorry you are joining us, but welcome. I had lumpectomy too and should start radiation soon, although my surgeon was a bit concerned with my path report and is meeting with my onc Tuesday to be sure mastectomy isn’t needed. Great news that it doesn’t look to be in your lymph nodes! Please let me know if I can help with any questions!

Amica

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

oxygen18

Just had a near accident that could easily have sent me to that galaxy way far away, and it was a powerful reminder to me to grab every chance to live it up despite all the sad stuff. It had been much easier said than done, until minutes ago, when I saw that other galaxy right in the eyes. Thought I'd share.

The near accident brought to the scene the cutest first responders. But ok, enough about cute guys, I'll try to remember there are husbands and pals we don't want to make all jealous...

Amica, it may well be that 20 years of healthy lifestyle did make a difference, and let's think it was an investment that will enhance your ability to fight back against this stupid cancer. That said, I think this week most of us could also use some chocolate covered orange rinds, they're on the coffee table.

You all take care.