Starting Chemo February 2009?

Jaimieh

Bev I am a hoarder by nature but after looking at them for months I finally gave them up. I think I was able to becausw I did it on my own time.



So we wnt away again this weekend and we are on our qay home now. I am not looking forward to tomorrow and getting things back together.



I had an onc appt on Friday and everything went well UNTIL they found out that they need a bone scan because of the trial that I was on I was in a Çrabby mood so I told them NO. My veins are shot and I do not think that I am willing to do it. I sound horrible but my kidney Dr is ordering an IV test IVP and now they want a bone scan in addition is too much on my veins right now.

Bethie1

Hey gang!!! I am wiped out today!!! Spent the day up at my local campground--Thompson's Lake--brings back memories of when I was a kid camping there!!! got burnt to a crisp!!!! 6 hours in sun and swimming!

kerry-- Hope your Canada day was great!

Jamieh-- I'm with ya girl--I threw out my wigs, but for some weird reason kept my scarves. 

I'm so glad I'm cancer-free!!!! August is 1 year cancer-free!!!  Going to Vegas again Aug 5-9 for a Donny Osmond reunion, and celebrating my 40th birthday a few days late--BD is 7/29!!!!

Well night ladies!

Bethie

Jaimieh

Sue~ How did your doctors appt. go ??? 

MicheleS

J~ a pet-scan will also work for the clodronate study.  Have you had one of those in the past year?  If so, tell them to use that data.

Jaimieh

I have not had a pet but I have had a boatload of CT scans .  Nobody called today so I must have the coordinator scared to call me .  She honestly is a doll and I think she is fabulous BUT I am done with getting poked on with IV's.  I am officially a grump ass.....

Can you tell I am in a rotten mood today even though I booked 2 sessions for within the next week with a possible 3rd on Thursday. 

Artemis

Hi, Furies!
I had Herceptin today, and there's only one more to go ~ woot!  And after going up up up for the past three blood draws, my liver function levels are finally down ~ double woot!  I was so nervous going to see the onc today because I was so afraid the liver numbers were going to be higher plus I've just been very weepy lately.  I started crying in the parking lot like an idiot.  Then I cried all over the PA even after she told the numbers were good.  She sent the social worker to talk to me, and I cried all over her, too.

Long story short, we decided I need to try going back on an antidepressant.   (I'd been on Wellbutrin since 2005; had to quit last year since it interferes with Tamoxifen.) 

Funny moment with PA:  she asked while looking at my chart, "Now, have a you had a mammogram recently?"  I said, "No.  I have no breasts."  She said, "Well, that was a stupid question then, wasn't it?"  LOL  Bless her, she was embarrassed, and she made a note on the front of the chart (the info about BMX was buried waaaaaaaaay down) so that she'll see it from now on.  She's very sweet, and I really like her.

About wigs and things, I still have one wig and several scarves.  I just can't quite get rid of them yet. 

(((Jamie))) ~ you just go being a grump ass for as long as you need, sweetie!

Love to all of you!  Artemis

KerryMac

Artemis - I hope the antidepressant works for you! I think it is a good decision to try it again - there are some that don't interfer with Tamox. Hope you feel cheerier soon. Good news on your liver function!

Jaimie - don't do anything you don't want to. I hear you on the IV's - I am due two in September (Zometa and MRI) and I am already worried about them finding a vein. I just have so few left. Ironically, my right arm is full of juicy ones that we can't use!  Congrats on all the bookings - your photos are just lovely.

Jaimieh

((Artemis))~ Thank you.  One more herceptin....whooo......  I hope the antidepressants work for you. 

Kerry~ I am allowed to use both arms but they are both crap now.  Thanks for the compliments on my photos, I honestly adore my job. 

Today I get to go to the podiatrist because my big toe nails on both feet are infected and looking like they are going to fall off .  It's gross and I am hoping that I can find a solution today AND keep my toenails.  I do not want to go thru flip flop season without my big toe nails. 

So far today I am not as grumpy.  I am hoping to get a lot done today so instead of feeling grumpy I feel like I got a lot done instead.    Off to get a bunch of things crossed off my list. 

susan13

I see onc. again this Thursday and I believe he's going to give me his plan.  The FISH test on the ovaries was HER2 1+.... which I am to believe it's negative...?  But I swear it seemed like he was trying to tell me it was +.  He ordered a IHC and we'll see what that says.  I will also get the results of the path from the hysterectomy, for some reason these cancer hospitals are a bit slow on getting path reports out to other docs.

Had an echocardiogram today and have a cardiac consult tomorow. I want to make sure that I am going back into chemo with a strong heart.. after having adriamycin and cytoxan 1st time around. Funny thing is that I was hoping that maybe there was a little something wrong so that my onc. would say "sorry you can't do chemo again".. but... the tech said to me when I was leaving "except good news tomorrow".   Strange how the mind works! 

And Jamie you are allowed to be grumpy:-)  Did you not have a port??

Oh... please tell me if I am crazy but I asked onc. if he would let us go on our planned vacation 2nd week of August... then start chemo.  Would a week or two really make a difference???

gcpommom

Elaine:  Yay for almost being done!  Funny story about your doctor...I know they have alot of patients, but geez, you'd think they'd remember something like that, lol.  So glad to hear your levels were good : )

Jaimie:  glad you're feeling a bit better.  I went through last summer missing one big toenail, I just kept a bandaid on it to hide it with sandals.

Sue:  Do you mean HER2 1%?  I know with the ER reading, if it is under 10% I believe, it is considered negative.  I would ask him to clarify that for you.  I know when I had my bone density scan, I was hoping it would be positive so I could take Bonita or something similar without joining a study, so I know what you mean about how strange the mind works.  When did your onc want to start chemo?  Did he think it would be ok to wait? 

Hope everyone is feeling ok, and not sweltering too much in this heat.  At least we're getting some rain here and there. 

Jaimieh

Susan~ He maybe hoping it is positive so you can get herceptin in addition to anything else.  I hope he comes up with a good plan for you.  I did have a port but my veins still didn't do so well.  They are shot

I still have my toe nails but the podiatrist said she didn't know for how much longer.  I did get an antibiotic for the parts that are infected.  Glad that she isn't going to remove them so they will be hanging on for a bit longer . 

Now I just need to figure out the nipple thing and then maybe I might get some tats before the end of the year .  I still have not heard from the trial coordinator so I am not worried a bit about it. 

MicheleS

Sue~ I think that it has to be 1.3 before you are considered HER+.  Let me know if I am right!

susan13

Here's what I found online, and of course I'll have him explain it to me tomorrow.  This says 0-1+ is negative, I am not sure what my exact # is ... yet.  But isn't a status of HER2 positive NOT a good thing???

"""Interpretation of IHC relies on a qualitative scoring system on a scale of 0 to 3+. A tumor biopsy is scored as 0 (negative), 1+ (negative), 2+ (borderline), or 3+ (positive) on an IHC test based on the reviewer's interpretation of staining intensity and completeness of membrane staining. ⁵ With FISH testing, the results are quantitative instead of qualitative; tumors are interpreted as HER2 "negative" or "positive" by enumerating the HER2/neu gene copy number"""

KerryMac

I think a lot of the new breakthroughs/research are for HER 2, so it is now becoming a good thing. Although it does mean a more aggressive type of cancer.

I have read that triple positive is as hard to treat though as triple negative, as nothing works as efficently.

Anyhow, it will be interesting to see what your Onc says. I hope you can get your vacation in before starting Chemo. Let us know how it goes!  

Jaimieh

Sue if you are her2+ then there is a lot more drugs to fight the disease and couold explain the nasty buggers persistency.  So that would allow you to get herceptin, tykerb, neratnib, Tdim (or something like that it's a super herceptin) and other drugs that are coming in the pipe line.   There are some women here who were able to get back to NED quickly with herceptin.  Anyhow I hope your onc. has a great plan and that you get to go on your vacation first.   

MicheleS

Sue~  The FISH is what I was talking about... 1.3 copies (meaning the gene is up-regulated) is a + (I think).  Being HER+ used to be a very bad thing but now that there are good targeted therapies for it, it is neither good nor bad.  It will just change your treatment plan.  You've been ER+ since the get-go, right?  Now that is a "Good Thing"-- as Martha would put it.  Keep us updated!

xpectmiracles

Sue, I hope you get to go on vacation before starting up again. I am in the car on the way to Michigan. Judy, do you have time to meet up tomorrow for lunch? My vacation is very short. We will only have 3 days to visit family and friends.

I've been having more vaginal bleeding. This time I have noticed occasional cramps.I talked to onc's nurse and she siad my hormone levels have been consistantly low, I am menopausal. The onc called too, but I missed her call. I wonder if I have fibroids in my uterus.

susan13

Thanks girls.  I will let you know how I make out tomorrow with Onc.

Cheryl, are you on tamoxifen? Tamoxifen caused my uterus to thicken up and caused cramps, and I had bleeding for a good 8 days.  I think you were thinking about an ooph/hyst ?? 

xpectmiracles

Sue, I am on femara. Tamoxifen gave me too many side effects so I've been off it since last fall. Next week I go in for a vaginal ultrasound and have appt with gyn to talk about hyster/ooph. My onc says even if I have surgery I will need to take femara.

susan13

Cheryl, how r u doing on Femara?  So far my Onc. has mentioned that also for me after chemo.

Ok, this is the site I was getting the HER2 info from. It says FISH- is less then a 1.8.  So now I'm even more confused. Guess I just have to wait till tomorrow.

http://www.herceptin.com/hcp/HER2-testing/interpreted-results.jsp

susan13

Oh Cheryl... when you have your gyn appt, don't forget to ask about a surgeon who does Da Vinci hysterectomy's.  It's amazing .  I think I can be a spokeswoman for the darn procedure!  Hey... maybe that's a job thought for me the unemployed:-)

MicheleS

so maybe it was 1.8... I know it is 1-point-something... Regardless, let us know what the onc says!!

Jaimieh

Michele~ how is your expanders going ???

gcpommom

Cheryl:  I don't think I can commit to lunch tomorrow since Julia is back in the hospital tonight, and I'm not sure what tomorrow will bring : (   Her PICC line failed, they found another clot in her PICC arm, and will be doing a CT of her head tomorrow to rule out another clot at the base of her skull.  I'm sorry to have to miss having lunch with you...

Jaimieh

Judy~ Julia is in my prayers.....

Yes, it is 11:23 and I am still up after laying in bed for 45 min. I can't get to sleep....grrr...

KerryMac

Hey guys - well, we had Jack in to the Hospital again yesterday, and it looks as though he will be needing Surgery. he has had inflammation, which has caused the adhesions in his eyes - we have managed to get on top of the inflammation with Steroid drops, but the Dr. needs to go in and remove the adhesions. So, we are off on Vacation on Saturday, and Surgery probably the following week (26th July) Hopefully that will improve things for him. We still don't know what he faces long term.

susan13

Kerry so sorry little Jack needs surgery. Hang in there, and hopefully the surgery will fix the problem. Have a wonderful time on vacation!

Well HER2 is negative, still ER/PR+. Nasty persistent buggers were all in the uterus, cervix, myomentum(whatever that is) and peritoneal cavity.   Tumor markers are almost normal. CA27.29 dropped to 44, last week it was 58, so that's one good thing. Had it retestd today.

Good news, onc. says we can go on our vacation in August, then start chemo around the 17th. Bad news I have to get a port, again. Eck.  Will be getting Avastin and Abraxane, the schedule made my head spin, so he has to go over with me again next visit.  He said Avastin will be for a year, if not longer... anyone hear of this? That's awfully long;-(

MicheleS

Sue~ I was supposed to be on Avastin for a year but had to stop early so that I could have surgery (the jaw surgery that couldn't wait).  You have to be off of Avastin for 6 wks prior to any surgery.  I had very little SE from the Avastin.  I've heard that Abraxane is pretty well tolerated too.  It does have some taxol-like SE but you may not lose your hair!

Prayers for Jack and Julia.

Jaimie~  I'm doing well with the TE's.  Sleep is hard to come by but I'm exercising again and am able to do everything I need to for work.  I have 2 more fills and then the plan is to exchange in Sept.

KerryMac

Sue - great to hear you have a plan! And a bonus that he is letting you go on vacation first. I hope you get low SE's, and it kicks some serious cancer butt. And I really hope you don't lose your hair.

Jaimieh

((Kerry))- I hope the surgery takes care of Jack for good.



((Sue))- I have heard of avastin for a year or longer. I hope you have great success with it.



Michele- glad you are getting along well with the TE. You will feel so much better after the exchange.



As for me I am chugging along getting ready for the sessions from hell...lol... I did it to myself and did a model call asking for toddlers and I got some toddlers . It's going to be a great challenge and I feel up for it which makes me happy. I am supposed to have 5 in the next coming weeks.



Still waiting to hear from NOLA about my nipple