Anyone starting Chemo in August 07?

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  • wackyjackie
    wackyjackie Member Posts: 669
    edited September 2009

    I am going for onc visit and blood test on Tuesday, MRI on Wens and I will torture all these doctors until I get solid info no later than Thursday!!!!!!

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  • lilith
    lilith Member Posts: 543
    edited September 2009

    Well Jackie. Having had the laparascopic ovaries removal - I can guarantee it is a walk in the park. Really - nothing to write home about ! teeheehee - I had a lipo done at the same time, and THAT hurt (not that it is of any use... pfff, still a fat tummy).

    Hey, btw. For the New England gals (if any), and Jackie. I'll be landiing in JFK on the 11th oct, and taking off from the same on the 23rd. I plan to take my girl back to BeanTown - maybe with a stopover in New Haven - but should you be around in the area, I can adjust my itinerary (bean town is non-negotiable, as we have plans up there).

    Hugs hugs hugs. and holding hands. Jackie - I am making a mental point of coming on the board on Tue night to hear from you.  

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  • wackyjackie
    wackyjackie Member Posts: 669
    edited September 2009

    Lilith,

    Thanks for the info.  I would love to drive to JFK and meet you in betweeen.  Let me know what time you will be landing on each day. 

    Hugs, Jackie

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  • nash
    nash Member Posts: 2,600
    edited September 2009

    Thinking of you this week, Jackie. Big, big hugs.

    That will be really cool if you and Lilith can hook up in Oct! How's that for synergy--it's Breast Cancer Awareness month, you guys will be able to see each other, and Kaye, DeAnn and I will be seeing each other on Oct. 4th! Sealed

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  • nash
    nash Member Posts: 2,600
    edited September 2009

    BTW, went for my annual mammo today. The tech asked me why I did chemo, since my lymph nodes were negative. I am getting sort of tired of having to justify my adjuvant treatment decisions to random people. "Oh, I thought chemo seemed like it might be fun, so I went against the advice of my doctors and demanded it even though it wasn't clinically necessary." Sheesh.

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  • DGHoff
    DGHoff Member Posts: 624
    edited September 2009

    Ah. Don't you love questions like that. One of my favorites from a tech was, "so how come you only had the one breast removed and not both?"  "Um. How about because I'm not overly fond of removing body parts unnecessarily, maybe?"

    Seems like we are all visiting the doc this week. I was in today as the results of my BRCA tests came back.  Whew! No genetic mutation, so I can at least cross that worry off my list. Also, my vitamin D levels were normal at 41, so I guess I can cross that one off too.  I'll be thinking of you tomorrow Jackie and hoping you can soon cross some worries off of your list! Let us know how things go. 

    Oh, and Nash. Just a reminder we are meeting on Saturday the 3rd, not the 4th.  I'll connect with both you and Kaye directly to share phone numbers, etc. as we work out the details.

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  • lilith
    lilith Member Posts: 543
    edited September 2009

    Hi girls... 

    Jackie: I'll arrive in JFK on the 11th at 14h45; I plan to rent a car, and drive to New Haven; I am in no hurry though.

    On the way back, my plane leaves at 19h35 on the 23rd. Not sure when I will be getting to NY state - if I'll take a day to visit around with my daugther, or just drive down.

    Am thinking of you today - sending good vibes.

    and... got my first haircut! I've been very tenacious as I wanted to get a good length, but couldn't bear anymore my tumbling (litterally) curls. :) 

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  • nash
    nash Member Posts: 2,600
    edited September 2009

    Thanks, DeAnn--you're right, it's the 3rd. I knew it was that Saturday, just got the date screwed around. It's so annoying not having my head work properly anymore. Undecided

    Yay on the haircut, Lilith! Love your new avatar, too. You look hot! I'm going for a hair cut today myself--who knew it could be so exciting? Smile

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  • nash
    nash Member Posts: 2,600
    edited September 2009

    And I posted congrats about the BRCA on your FB page, DeAnn, but it's worth another "whoo hoo"!

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  • wackyjackie
    wackyjackie Member Posts: 669
    edited September 2009

    Hi Ladies,

    DeAnn...I'm so happy for your results.

    Lilith....love the new avatar.  You look great.  I am going to try to get there on the 11th.  Just have to wait and see what's going on right now.

    I went to my onc for my 3 month check up.  She is suggesting removing the ovaries also but wants me to go to "gynecological oncologist".  I didn't know there was one.  Am I stupid??? Oh well, she thinks I should get second opinion and maybe he can assist ob/gyn.  The CA125 test will take a few days to get back.  Tomm is my MRI, so I guess I won't know anything until the end of the week. 

    Hugs to you all,

    Jackie

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  • nash
    nash Member Posts: 2,600
    edited September 2009

    Jackie, I think seeing the gyn onc is a good idea. And no, you're not stupid to not have heard of one. The only reason I know of them is b/c my 2nd opinion onc had sent me to see one b/c he thought I was still at risk of ovarian cancer even w/the BRCA coming back negative, both as a primary cancer and a mets spot b/c of my lobular bc. Anyhow, they are better at reading pelvic u/s and MRI, etc, b/c that's what they deal with all the time. If I were going to have an ooph, I'd go to a gyn onc if possible, b/c they do them all the time as well.

    Also, the CA 125 is notoriouly inaccurate, even worse than bc tumor markers, so don't panic if it's elevated. 

    I will be thinking of you tomorrow, with the MRI. I'm so sorry you have to go through all this crap. Will be praying for benign results.

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  • yellowtownhouse
    yellowtownhouse Member Posts: 142
    edited September 2009

    Hey Everyone,

    D........, we go out of town and I come back and hear what sweet Jackie is going through!  Jackie, Nash is spot on regarding the test.  I've been there with the exact same thing and it came back abnormal, had a complete hyst and both ovaries were negative.  This was about 14 years ago.  Praying for you tomorrow and for me.  I too am going for my 6 month f/u with surgeon & radiologist for MRI/ US/ Mammo.  The only good thing about where I go is that you get all results before you leave.....no waiting for phone calls.  Hang in there honey.....we've all got your hands and your heart in ours.

    lillith.....whine...pout.....can't you come a little further east....like to Atlanta????  I'm so jealous of you all getting to see each other!     I'm really thrilled for all of you but so wish I could figure out a way to join 'the party' somewhere.  Enjoy each other ladies for you all certainly deserve it. 

    love and hugs to all,

    June

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  • katoMato
    katoMato Member Posts: 645
    edited September 2009

    Hi Ladies - (sheesh, I'll never catch up.)

    Jackie & June, how'd the MRI's go today? Uneventful, I hope.  June, you get an MRI, an ultrasound AND a Mammogram in the SAME day? Busy day! (Although it does seems like a good idea getting them all done at one time.)

    Hey, ladies, are you all getting yearly MRI's automatically? What is standard? I"ve been getting mammos scheduled every February,  but no one has mentioned MRI to me, and it's been over a year.

    Hey, June - you don't need to whine or pout - you just need to check out Virgin Air prices (dirt cheap this week) and get out here to come with US. I'm tellin' you, i've got the room and i'd love to have you. It would be CHEAP. (Don't MAKE ME come and GET YOU....it could get REAL ugly.)  You could probably fly right in to Palm Springs from wherever, I'll get you, and VOILA you're here. Seriously, check out the flights. I get "travelzoo.com" to send me good deals, and Virgin Air is working a special;  they're insane they're so cheap right now.

    Lilith, love the new hair cut - you look gorgeous!

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  • wackyjackie
    wackyjackie Member Posts: 669
    edited September 2009

    Hey June,

    Please let us know how the results went.  Kaye, I'm only getting an MRI because of this finding otherwise I don't get any tests besides bloodwork.  By the way, went to pick up my son from football yesterday and, of course, missed the doctor calling with blood (CA125) results and he did NOT leave a message.  Of course, he's in the hospital all day today so I won't be hearing from him.  Have to wait until tommYell

    Hugs, Jackie

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  • nash
    nash Member Posts: 2,600
    edited September 2009

    Good luck with everything, June--so glad you get the results the same day.

    Kaye--the annual breast MRI's aren't standard of care. I get them b/c of history of lobular bc (which is almost impossible to see on mammo), history of pleomorphic LCIS and dense breasts, but even then I don't fit in the ACS guidelines for routine MRI screening. My onc just feels they're necessary in my case. She said she doesn't do them routinely b/c of the high false positive rate (which actually happened with me with the last MRI in March--remember all that biopsy angst?). 

    Jackie--ugh, sorry the doc didn't leave a message. Hope you can get ahold of him today. Let us know as soon as you hear something.

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  • yellowtownhouse
    yellowtownhouse Member Posts: 142
    edited September 2009

    Hey Ladies,

    My results from all the testing were negative....yea!!  I always feel like I've dodged a bullet.  However, my primary doc and oncologist have been monitoring some whacky lab values on me for months now and I sure don't like what I'm seeing.  Some strong indications for chronic kidney disease and autoimmune disease.  No, I'm not a diabetic and have no family history of kidney disease.  I guess we continue to monitor at this point but I am once again researching preventions and life style changes.  Of course the first thing that comes to mind is wondering if there is a  correlation here to the chemo and rads or just the aging process.  It's almost too depressing and frightening to search this very closely. 

    Jackie, I'm so sorry you missed the call....hoping and praying with you today.

    best to all....

    June

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  • lilith
    lilith Member Posts: 543
    edited September 2009

    June, congratulations on the mammo side. Sorry you still have to worry about something - but hopefully it is NOTHING at all. 

    Jackie, awaiting for your results... Hugs.  

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  • nash
    nash Member Posts: 2,600
    edited September 2009

    Yes, June--congrats on the clean mammo/MRI. Keep us posted on the other stuff--hope the docs can get it sorted around.

    Thinking of you, Jackie--hope you've heard something by now.

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  • katoMato
    katoMato Member Posts: 645
    edited September 2009

    Hello Ladies,

    Jackie - Have you spoken to the doc yet about the CA125 result?

    June - Do you have any symptoms other than odd labs? And what kind of autoimmune disease are they thinking about? The correlation between things like that and and chemo/rads always come to my mind first, too. It's like the things that would have probably fallen apart naturally with age, have just been given a fast-track because of everything we had to put them through. Ahhhh well. We're here.

    Hugs to everyone...

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  • wackyjackie
    wackyjackie Member Posts: 669
    edited September 2009

    Hi Ladies,

    June....happy about the mammo results.  Not happy about the other news.  It seems we all have to worry about all these side effects.  Yuck!!!!  I agree with Kaye.  We've all been put on the fast-track to everything.  blaaaah.

    Good news for me is my CA 125 is okay.  However, did not get results of MRI.  On Monday morning my ob/gyn nurse is going to meet a side of me she's never known.  I just don't have the patience or the energy to be "nice" to these people anymore.  They just treat you like it's no big deal.  Normally, to me, I would be so "nice" and say, "okay, no problem" but right now I feel like smacking everyone!!!! Whew....thanks for letting me get that off my....oh, wait a minute...I don't have a chest.  LOL!!!! Well, thanks for letting me blow off steam. And my ob/gyn nurse will appreciate it too!!!

    Have a great weekend.  I'm going to enjoy this beautiful weather we are having.

    Hugs, Jackie

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  • yellowtownhouse
    yellowtownhouse Member Posts: 142
    edited September 2009

    Hey Jackie,

    good to hear from you and relieved about the 125.....will continue to keep the best thoughts for you on Monday.  Honey Chile....I want you tp go right ahead and blow BIG TIME!!!!!!  I most certainly think we've all been given an excellent reason to do so.  AND and I'm not talking about the d**** cancer diagnosis but just the callous/ indifferent treatment that we've all been subjected to during our journey through this.  It sometimes  makes me ashamed to admit that I've been part of this 'oh so great medical field' for 40 years.  However, I can truthfully say that I have never treated a patient in the way I have been since this started.  I don't have any answers ladies, for I simply don't understand the lack of compassion or just decent behavior on the part of so many. 

    Thanks for all your replys and good wishes.  As to the autoimmune thing, no I don't have any symptomology.  However, the mind will jump to the most common ones like MS/ Lupus/ Scleraderma/ and others.  I'm beyond even trying to second guess anymore and trying hard not to live my life by continually crossing bridges.  However, I'm sure you all can relate when I say that I'm more weary than I can tell you of feeling like I always have to be in "fight mode" to be prepared for what's going to come out of their mouths (docs) next!

    Best to all and lots of hugs....

    June 

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  • nash
    nash Member Posts: 2,600
    edited September 2009

    Jackie, good news on the CA125. Give 'em hell on Monday--what crap to have to go through the weekend not knowing MRI results. Hopefully, though, no news is good news.

    June, you're right--we're all weary of the treatment from many of the docs and nurses. Have to be our own activists constantly. Even simple things, like IV starts--I swear, the next nurse who tries to start it in my hand instead of my arm b/c it's easier for her (not for me! They always hit nerves and my hand hurts for weeks) is going to get smacked up side the head. Tongue out

    Anyhow, hope everyone had a good weekend. My DD turned 11 on Friday--had a sleepoever of "tweens", God help me. Actually, it was fun--busy weekend with company and various festivities. I see the internist on Tuesday for an annual check and the onc on Wednesday for a 3 mo check, plus pelvic u/s for annual Tamoxifen issues check. Whee! Fun stuff.

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  • suz45
    suz45 Member Posts: 796
    edited September 2009
    A few seconds ago suz45 wrote:

    Wow!! Hi All, First I must say how beautiful you are are looking. I love all the new avatars.

     Im Suz from the Dec 07 group.. for the most part we were a small group and slowly migrated over and started our own facebook group.

     I read all your posts all through my treatments as you gals were a wee bit ahead of us so it always gave me something to look forward too (lol or not) I posted a few times but slowly faded away from this site.

    Well.... I guess I'll be back for a while. I have a new fast spreading/growing cancer on my right side, 7-8 small tumors in 1/4 of the breast, 3 nodes under my arm and a few nodes in my neck (not sure if its 2 or 3 yet). Background is Lumpectomy with 21nodes removed 2 bad. Chemo dec 07,  bi-weekly AC then paclitaxol ttl 8, rads then ooph Sept 08. Have had reg mammo mri & ultrasounds every 6 months (Im brca1) and whammo Im right back into it. Its a long story, its wrong the way it wasnt treated when I found it three months earlier but Ive already ranted on the board about it

    I had my port in on the 11th and first chemo a week ago. Have had about 20 different tests done in a few weeks. Still seem unreal....I just got my first real hairstyle since my last chemo 8 days ago Wink hope to keep it at least a few weeks.

    Anyway Im trying to stay possitive & active. I dont want to post on a newbie chemo group as I think it wouldnt be good for them. So Im fluttering around to a few old posts feeling things out and catching up with everone who stayed around...heh heh still have my morning smoothies.

    Love hugs & sunshine to you all, Suz

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  • yellowtownhouse
    yellowtownhouse Member Posts: 142
    edited September 2009

    Hello Suz.....I'm so sorry to hear what you're dealing with.  Please hang with us and know we welcome you any time you want to 'visit.'  Keep on posting and know that we'll all be praying for you and sending you the biggest hugs possible. 

    June

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  • nash
    nash Member Posts: 2,600
    edited September 2009

    Oh gosh, Suz, sorry to hear about the new primaries. That sucks. Totally hang out here with us--we're a friendly group and would love to have you. Like June said, keep us posted, and we'll all be rooting for you.

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  • lilith
    lilith Member Posts: 543
    edited September 2009

    Suz - you are very thoughtful and kind to think about all the new-comers - and definitely welcome here with us. 

    Your new hairstyle looks very glamour - I am sorry to hear about the new chemo rounds. maybe it will be a different product? but the important thing is that it is effective; that it gets rid of your new primaries, that it kills all bad cells. 

    How many cycles, do you know? and most importantly - how are you feeling? 

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  • wackyjackie
    wackyjackie Member Posts: 669
    edited September 2009

    Oh Suz...

    So so sorry to hear about what you have ahead of you.  As Lilith said,  you are very kind to think of the newcomers.  You can get plenty of advice here.  Nash is a walking talking encyclopedia and what we don't know, well Kaye's hubby researches and finds out!!! I'll be praying for you.

    Hugs, Jackie

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  • wackyjackie
    wackyjackie Member Posts: 669
    edited September 2009

    Ladies,

     XRUGHXHOO!!!! I don't know how to do that curse thing but that's what that is supposed to be. IT is Tuesday at 4:50 PM and I still have NOT spoken to my doctor.  Yesterday I was firm with the nurse and I called the hospital where I had MRI done for results, then I called back the nurse and she finally received them.  She tells me I have NOTHING on my left ovary!!!! Maybe a fibroid.  I've had fibroid tumors for years and doc did not mention this is what it might be.  Anyway, I get excited.  Maybe good news.  Well, ladies I still DID NOT here from this man.  I screamed at the nurse this morning (and felt bad because it's not really her fault if he's not calling).  Tomorrow morning I am going to his office to get copy of the MRI results and make a little (or maybe a LOT!) of noise in front of the other patients.   This is so not me but I'm upset.  Then I'm going to make appointment with gynecological oncologist just to be on the safe side.  At this point I don't know if I have something or it miraculously disappeared or what.  But...he's the one that made me rush to his office and told me I should get my ovaries removed!!!

    Whew!!!! Thanks again for listening.

    Hugs, Jackie

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  • nash
    nash Member Posts: 2,600
    edited September 2009

    Oh gosh, Jackie! Well, I'm glad there was nothing on the MRI, but jeez! What made the doc suspect something on the left ovary to begin with--was it via physical exam? Did you get a copy of the MRI report today?

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  • nash
    nash Member Posts: 2,600
    edited September 2009

    I went to my internist yesterday and my onc today. One of the TMs is up, but onc is unconcerned. She did order a bone scan b/c my upper back has been hurting for months--it's probably muscular, but she wants to be cautious. The internist did take an xray yesterday, which was read as arthritis/degenerative changes. Which is how they read all my scans of my bones--I don't understand how I can be disintegrating at my age, but whatever. Doesn't bode well if I live another 40 years.

    Anyhow, that being said, I am skating an exhitibion number on Saturday, the first time I've done that in 25 years. Yikes! I'm going to be competing at the end of January, so I thought I should get my patootie out there before then. There's a competition for the kids at my rink this weekend, so I'm going to skate first in what hopefully will be a low-pressure situation. Tongue out
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