January 2013 chemo group

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  • Skigirl72
    Skigirl72 Member Posts: 478
    edited February 2013

    We have/had a vasectomy doctor in Rochester names Dr. Stop! He was popular!

  • InspiredbyDolce
    InspiredbyDolce Member Posts: 1,181
    edited February 2013

    Skigirl, that is funny!  Here is a link to the wig I got.  I felt that it came in shorter than it looked online, but it's close to my previous natural hair.  I do have another wig, but the ends are fried on it.

    http://www.voguewigs.com/samantha-lace-front-wig-vivica-fox.html

  • MTJulie
    MTJulie Member Posts: 63
    edited February 2013

    Knew a ob-gyn named dr handwerk!

  • Anonymous
    Anonymous Member Posts: 1,376
    edited February 2013

    We lived by a lake in Florida in the early 90's. one day our 4 year old Jesse was fishing on our deck with an 11 year old neighbor boy. The neighbor was casting and his hook, worm and all got caught in Jesse's lip. The barb was embedded so we had to take him to the ER. The Dr's name was Dr. Fish.



    Blessings

    Paula

  • LeeA
    LeeA Member Posts: 1,660
    edited February 2013

    One of the doctors in the ob/gyn practice I went to when I had my son was named Dr. Hyman.  One letter off...

  • Anonymous
    Anonymous Member Posts: 1,376
    edited February 2013

    Oh boy i missed a lot of fun stuff last night!  I love this site - it's serious,  helpful, yet so very fun!  The vacation talk has really lifted my spirits too.  Maybe i'm just coming out of the chemo #3 funk, but i am actually getting excited to start planning our trip.  Key West wins.  I think I may buy trip insurance this go-around just-in-case.

    jayjayc - I've been asking myself the same question - why radiation if i'm doing all this chemo business.  I'm having a really hard time swallowing that pill just because the benefit is so low and the risks are so high.  I keep getting mixed info on why?  Local recoccurance, okay i had a mastectomy and was told the risk was 1% after that but whatever...then why the lymph nodes from my clavicle to my hip?  Because that stops a local recoccurance from spreading because it kills the exit ways (also known as lymph nodes...and enjoy your lymphedema btw :) ).  I think i'm going to do it because of my age/tumor aggressiveness/etc.  But it is a very tough one for me.  Plus - increases the likelihood my reconstruction won't work after I have to wait minimum 6 months to have it.

    byrona - I hope taxol is a cakewalk!  That does put a new perspective on it for me though - even thought it's easier, it's still weekly treatments that you have to think about.  i think you should plan the best language immersion trip EVER next summer.

    kiwikid- Best news EVER!  wow - so they just said, "you can be done now"?  I think i would've broken out in tears at that moment.  

    sherylb - thank you for the rec! key west was on the list but then hawaii came up. i think a 4 hour flight is much more reasonable with a 3 yo. It's the winner!

    Lee - is that the beach the north of hanalai?   I think i went snorkeling there.  It is one of my favorite spots too!!

    skimommi - i think i had to wait 1 month for recon if i DIDN"T get rads. If you get rads, my PS won't touch me for 6 months to a year (yes, i said a YEAR). My DD had the stomach flu yesterday. i tried to keep my distance but i fear i didn't escape some of the projectile vomiting. Here's our test for that darned neulasta :)

    Cheers ladies!  I really enjoy all of your messages.  Thank you for making my day that much better.

  • MandyNJ
    MandyNJ Member Posts: 73
    edited February 2013

    Hi everyone - I'm here I'm here! I just took a break. Had A/C #2 on Monday and neulasta on Tuesday. I'm faring better this time around, but this still blows. Hair started shedding on day 14, really got going on day 16, and now we are getting clumpy on day 18. I'm thinking I'm shaving by the weekend. I'd like my children to be there since I think it'll be easier on them to see it happen but my husband works nights so it'll have to wait. I'm taking a page out of Shannon's book and I'm refusing to cry over my hair. So far anyway.



    Oh and my oncologist changed up my meds thinking the other combo just wasn't working for me. She said I was a statistic. No duh! Hahaha. So now I'm on Ativan at night and compazine 3x a day. I'm taking a half a pain pill for pain and I'm holding my own. Went for a walk with my husband and dogs today and feel not too bad.



    My mother is sick so my sister in law is coming to Mandy-sit me and help w the kids. My inlaws have been fantastic and helpful - including running out for diapers when daycare forgot to tell me my Tori was out of them.



    Anyway, hope you're all well!!

  • kiwikid
    kiwikid Member Posts: 204
    edited February 2013

    Hi ladies

    I'm seeing the surgeon today for some skin changes above my surgery site. The skin is pink and feels slightly warm and thick, just a bit harder to pinch than the other breast. Does anyone else have slightly thicker skin over their surgery site?

    Will take another chill pill and hope for the best.

    Xx

  • Skigirl72
    Skigirl72 Member Posts: 478
    edited February 2013

    Mandy- I have a bunch of anti nausea meds and I settled on Compazine and Ativan after I am finished with the Emend and Dex. Those have been the big winners for keeping everything at bay. I just needed then a few days after the emend. Glad they were able to switch things around for you.

    Kiwikid- I have a 'firm' spot under my reconstructed boob. They keep telling me its fluid and it will go away if I massage it a few times a day. In the same breath, My PS said we have some revision surgeries ahead of me after rads. Whatever that means... The surgical scars are ok. Just the surrounding tissue is a bit hard.

    I'm in for Key West... I'm good to go anytime after Labor Day!

  • duckiedee
    duckiedee Member Posts: 45
    edited February 2013

    Hey girls, I just read this about switching your anti-nausea meds. I have been on zofran and companzine to use post chemo. (They give me aloxi on infusion day and the steroids for 3 days too.) I complained last time about the HORRIBLE constipation I get from just a few days of zofran, but I was told that it really was the best at preventing nausea. Is ativan in that same class of drugs? Does it cause constipation too? I'm just wondering if I should ask about that for my next round? I completed round #4 last week, and it was by far my worst one. Not only did I have the terrible constipation again, but it coincided with diarrhea cramping and pain. I couldn't even pee without my bowels cramping up - but nothing would come out! My poor body was so confused, and the folks I talk to at the doctor's office don't seem to understand. It takes many days of misery to get things straightened out again. Am I the only one whose body does this to them each time? Does anyone else have to combat constipation and diarrhea - at the same time? I didn't even know that was possible. Until now. But then again, I didn't know a lot of things until now. Just curious if I am a freak of nature. Any advice?

    And by the way... so far I have tried Miralax, Colace, Dulcolax (BIG mistake!), Senokot S, and Phillips Milk of Magnesia. All with only marginal success. Once the constipation grabs me, it's like my bowels are in a vice grip. Nothing moves. Ugh... 

  • Skigirl72
    Skigirl72 Member Posts: 478
    edited February 2013

    I start the colace a day before TX. Then the day of TX I bump it to 2 a day (1 am, 1 pm). And I make sure I am eating bran and fiber (I love bran flakes cereal). I had nasty constipation the first go around and ended up taking too much MOM with colace. Boy, that was a mistake. I only used the ativan to sleep and the compazine for nausea after the 3 days of emend/dex pills. Now that I think I have this whole AC thing figured out, this will be my last one next week...

  • Bryona
    Bryona Member Posts: 214
    edited February 2013

    duckiedee, I had vicious constipation for round 1 of AC. I start colace (250 mg capsules) in the morning before tx. I take one then, two in the evening, and two each morning and evening (yep -- 4 a day!) for the next 5 days. I start taking Miralax the morning after tx and take one dose a day for 4 days, which is about the time that I start feeling confident that things will keep moving without it. With that much stuff going in, and trying to make sure there's a bit of fiber in my diet, too, I've been able to stay regular for tx 2 and 3, and 4 seems to be going okay so far. I never had issues with diarrhea, though, so I'm not sure about how juggling treatment for both would work.

    Names: I had a friend in college who was born on Hallowe'en and had the last name Coffin. I also had a high school algebra teacher named Richard Bender, but he went by Dick instead of Richard. Seriously. Who does that?

  • bcfree2013
    bcfree2013 Member Posts: 94
    edited February 2013

    Just came back from a genetic test of brca genes. Will have the results back in two weeks. MO says the results will affect my surgical options. I am so nervous. But I am happy that my insurance company covers the test.

    There are two types of tests available. The standard brca test and the new breast next test, with the second testing for a larger number of genetic mutations that may be related to breast and other cancer. I chose the standard one because I don't even want to know whether I have other genetic mutations that may increase my chance of getting a certain type of cancer. The counselor did mention that there is a specific gene tp53 that will affect radiation treatment, ie, people who tested positive for that gene should not get radiation treatment because of high risk of developing cancer from radiation. I am scared by all the information I get......

    Pray for negative results! Did any of you get the test?

  • Skigirl72
    Skigirl72 Member Posts: 478
    edited February 2013

    I had the standard BRCA test and it took about a week for the results. They told me 14 days too. My BS called me when they got the results and told me over the phone. I don't think I could have waited to make an appt and go hear the results in person. Just tell me dammit!!! I was negative. I had already figured I had two choices. 1. path negative- The TRAM reconstruction that I went with... or 2. Path positive- remove both and get implants, no hesitation. I read all the material they give you and that's how I basically decided what to do. I am going to look into the other genetic testing for radiation risks... or at least ask my MO at the next appt.

  • bcfree2013
    bcfree2013 Member Posts: 94
    edited February 2013

    Skigirl, it's great that you tested negative for brca! I read the Breastnext Test brochure they gave me and Breastnext tests for tp53 mutation that may affect radiation treatment. But I've been told not to worry about it because every person has certain genetic mutations and we just don't know enough about most of them. And also the BreastNext test takes 6 months which is a long time. From the brochure, it says for hereditary breast cancer, about 50% is caused by brca mutations. The Breastnext can test for genes that accounts for 15-20% of hereditary breast cancer, and the rest are related to unknown genetic mutations.

  • LisaMM
    LisaMM Member Posts: 120
    edited March 2013

    Have any of you ladied receiveing TC experienced tingling in fingers and toes?  I started it the evening of my first treatment, then got better to where I really didn't notice it unless I paid attention to it.  Same thing with second tx yesterday-got increased tingling last evening but minimal by morning again.  My onco said they may need to adjust my doses.  Both the tingling and decreasing a dose make me a little nervous.  Just wondering if anyone else has had this particular problem?

    I envy some of those trips I see mentioned above!  I am excited though for the trip we have planned the beginning of June!  Going to the Outer Banks in between finishing chemo and starting rads!  I can't think of a better pick-me-up from the chemo!  I'll just have to be careful with my naked noggin though, it will not be easy because I love that sun!  Just thinking about the whole thing keeps me going! 

  • MandyNJ
    MandyNJ Member Posts: 73
    edited March 2013

    It's startling how quickly AND slowly your hair falls out. The clumps are so large that you're thinking there can't possibly be any left. But really, there are so many hairs on your head that I can see this taking a while.



    Debbie - I think you're right. This is the right combo of anti nausea meds. I'm already on the upswing.

  • Bryona
    Bryona Member Posts: 214
    edited March 2013

    bcfree, I also had the BRCA test come back negative. I had no family history, so the only reason they ran the test was because of my age (42). Fingers crossed that your test comes back negative, too!

    LisaMM, I haven't had neuropathy because I'm just finishing AC so far; I understand it's a common side effect with the taxanes (Taxol, Taxotere, Abraxane). Like most side effects, it should clear up when you're done with tx. How many rounds do you have?

    Mandy, I'm so glad to hear that you've found the right cocktail! It's about damned time something went right for you! Here's a happy dance in your honor:

  • ywheels22
    ywheels22 Member Posts: 230
    edited March 2013

    BCfree: I had both brca tests and both came back negative. I am not having radiation. I had double mast with double reconstruction. The chemo is preventative as for all intent purposes, the cancer is gone.

  • LisaMM
    LisaMM Member Posts: 120
    edited March 2013

    Bryona- just had my second round yesterday. Same tingling with both tx. Still feeling it now only it's minimal. At least it's no worse than the first round . I guess I'll see what they have to say about it next time.

  • Anonymous
    Anonymous Member Posts: 1,376
    edited March 2013

    Damn 'puters. I just submitted a response and it disappread. I'll try to recreate/remember what I posted.

    bcfree I had the brca and bart tests done. The bart is a rearrangement of the brca 1 and 2. But, from what I was told they still know very little about the outlying mutations that might be found in the rearrangement. I wonder if the test is the same as the breast next test? I hadn't heard of that one.

    Lisa my MO, PT and acupuncturist are continuously asking me if I feel tingling or numbness in my fingers. I haven't thus far. I've researched enough though and heard from others that it can be mild and go away, or it can linger even beyond chemo. So be sure you are talking to your MO about it. It can be treated with physical therapy, acupuncture and I've also read B12 can be beneficial to treating it. Neuropathy is a very common SE of chemo, so don't be concerned thinking it is something out of the ordinary.

    julesdenver if you do look at going to Key West, check out VRBO. We found a condo in one of the islands just north of KW for $900 for the entire week. I use VRBO when we are going any place for more than a couple of nights.

    Continuing on the name kick, I had a dance instructor though most of my grade school years by the name of Candy Cane.

  • Anonymous
    Anonymous Member Posts: 1,376
    edited March 2013

    Skigirl putting out an add in your honor:

  • Anonymous
    Anonymous Member Posts: 1,376
    edited March 2013

    Maybe we could luck out and get this on our dream vacay:

  • Jubby
    Jubby Member Posts: 85
    edited March 2013

    Skimommi, your crop duster cough has made me wet my pants. I had a girlfriend that used to talk about guys that wore too much aftershave "Man, did he put his aftershave on with a crop duster?"  I have never heard anyone else use the terminology before.  Re beach-going, I have been in my bathers with my plastic wrinkled boob several times this summer.   I wear a one piece these days (a 1950’s style pair with lots of tummy suction) so it hasn’t really been too obvious.  I only had one saline injection (2 massive syringes with no numbing).  That was fun.  I still have bruising at the site 6 weeks later.  My mum thinks it’s because I have no lymph nodes to drain away the blood in the bruise.  I might have to start massaging it but am terrified I might dislocate or puncture the expander.  Neurotic I know.  I am not having radiation so hopefully I can have the reco sooner than later but I know I will need some time away from doctors’ rooms and hospitals after chemo too.

    My son’s gastroenterologist is called Barry Lipschitz.  A poo doctor with $hit in his name.  Hmmmm…

    A family friend went to school with Ida, Bob and Neil Down.  What sort of loony calls their kids that?  My brothers went to school with Andrew Ness and Peter Ness (A.Ness and P.Ness) Hysterical.

    I have dead skunk taste in my mouth today 16 days after treatment #2.  It came back out of no-where.  Weird.  Dry eyes too. And LisaMM, I have had a little bit of tingling in my toes but nothing too major. I too her it is very common. 

    Heading to the county to visit my Mum this weekend.  Making the most of my last weekend off before treatment on Wednesday.  Can’t wait for someone else’s cooking and a sleep-in.

    Have a great weekend everyone.

    Xox 

  • ywheels22
    ywheels22 Member Posts: 230
    edited March 2013

    I am laughing at all the name stories! I have none to share but your alls crack me up.

    Jubby: I too have the dead, dull taste in my mouth, 9 days after AC #2. It comes and goes.

    I just never feel 'right'. Even when there are no SE's. It's like I am a stranger in my own skin. I have been able to go to the gym twice, walk the dog, run errands, take my son to school, yet I still feel 'off'. Anyone else get this feeling? I still have two more AC tx and 4 more Taxol tx to go.

  • Skigirl72
    Skigirl72 Member Posts: 478
    edited March 2013

    Skimommi- By my count we are going to need 26 of those cabana boys.... oh dear! And the picture is an accurate depiction of our 'ideal' specimen... We better place an ad soon!! We got to round them all up!

    LisaMM- The Weekly Taxol Group on here is posting about L glutamine (30g per day in 2 doses) and B6 to combat neuropathy. It's working for a lot of the ladies. I am going in for my last AC next week and plan on getting a firm grip on how much and when to take all of it. Seems the l glutamine is just for a few days surrounding TX and B6 is all the time. I heard somewhere about B12 also, but, that might have been in regards to growing hair.

    The one SE I wouldn't mind is no where to be found. Where the hell is chemopause? I had the mirena IUD for almost 10 years and no periods!! Now, since having it removed at the request of the drs, I've had 3 in 6 weeks... REALLY???? Not cool.

  • kingboo
    kingboo Member Posts: 28
    edited March 2013

    Going in for my TC#2.

  • LeeA
    LeeA Member Posts: 1,660
    edited March 2013

    Good luck today, kingboo!

    --

    Chuckling at all the names!

    --

    My next treatment is Wednesday and I guess I tried to do too much this week.  I am worn out and my legs feel like burning lead weights when I go for my daily walk.  This, too, shall pass and it could be worse - I just wasn't expecting it this late in the cycle but as ywheels said - strangers in our own bodies.

    --

    Have a great weekend everyone!

  • Nicole503
    Nicole503 Member Posts: 295
    edited March 2013

    ywheels22 ~ Yes!  I know exactly what you mean about feeling like a stranger in my own body.  I felt that way all the way through AC.   I have been feeling much better since starting Taxol and it is only through the process of becoming aware of what it is like to feel more connected (both in body and spirit), that I realize how deep the disconnection got.  Be patient....even though you have two more AC to go, it is temporary.  Smile

    I love the banter of this list.  You women are quite amazing in your ability to keep things light and fun despite the challenges that come when we all progress further into the treatment journey.  You all are the best!

    Wishing everyone a good Friday and a great weekend!

  • Anonymous
    Anonymous Member Posts: 1,376
    edited March 2013

    LisaMM - I have had 3 rounds of the cytoxan/taxotere cocktail and I have not had any tingling yet (knock on wood :) ). I have been using the 30grams of glutamine the day before and until 5 days after the treatment.  Please check with your MO if you decide you want to try this - people have posted this can cause other issues for some.

    That being said, I did have one terrible reaction to the taxotere after #2 that resulted in head to toe hives, swollen red burning hands and feet and burning eyes.  They say that is a common SE as well.  boo.

    kingboo - good luck with #2!

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