Starting chemo July 2014
Comments
-
You never know, JenKay. I'm fairly young (diagnosed at 46), and we have some cancer in the family (Dad has had skin cancer, e.g.). Plus, my cancer is aggressive (Grade 3) and all (growing like kudzu in the lab, as MO put it). But I tested negative. My daughter is happy; now she doesn't have to get tested and take preventive action. I was sort-of surprised -- I was mentally planning for a hysterectomy and BMX. Now, I'm seriously considering lumpectomy if my surgeon says it's a possibility (lump has been reduced enough).
0 -
JennKay - I was certain I would test positive (I'm in my 30s, horribly family history of breast and ovarian cancer and I'm from an Ashkenazi Jewish background - pretty much a slam dunk in BRCA terms) but tested negative....so you never know...
0 -
thanks you guys! That's encouraging.
0 -
Something Nancy mentioned about l-glutamine reminded me of a discovery I meant to pass on for anyone who is taking it - I found out that if I put it in something room-temp or warmer (I usually just nuke my refrigerated juice for a minute now), it completely dissolves, instead of swirling around in a gritty cloud. With strong-tasting juice, like cranberry-raspberry, I can't even tell it's there. Much easier to take now ...
0 -
Elaine: even if your cancer isn't genetic it can still be familial, and your daughter needs to be vigilant
0 -
Our July group has really grown over time. It's amazing how many members we have! There is no way we can all reply to each others posts but I have to say it again, it sure is nice to know you're all there with me.
0 -
thanks for the tip on l-glutamine kiLin
Nancy
0 -
Another war to take L-g is to mix it in a small cup of a breakfast drink. I use a little milk foamer whip. It goes right in and doesn't change the taste at all. I've been thinking about trying it with my coffee cream, but haven't done it yet.
Puffin is right about the family connection. They are recognizing that there are other genetic connections than the BRCA ones - cross gender also. My mother's family (including her) is riddled with cancer. I'm BRCA negative, but was told it is likely a family thing.
Recently, I have been working on some Christmas Ornaments for Quail Hollow Farm to sell to get flood recovery funding. This one will be auctioned at a benefit dinner. It is a burned, carved, and stained gourd.
0 -
Wow, how pretty, Coyote! Hope it brings in a lot of funds!
0 -
Coyote have you got a website or gallery of your stuff? I really like southwestern art and especially things with a roadrunner or quail motif. From what I've seen I love your work and would love to see more.
0 -
beautiful Coyote
0 -
Thank you. I don't have a website. I keep getting told that I should do that. I've never taken the time to learn how to put one together.
My bad, but it seems that every time I think about it, something else is more important. One of these days.... 0 -
I love the way you incorporate local materials.0
-
Coyote -- how lovely!
Yes, Puffin and Coyote, my cancer probably has familial roots and my children will certainly have to be vigilant. But my daughter is 15, and is just relieved that she won't have to be tested NOW for BRCA! (Teens never think past tomorrow.) She's certainly aware of the fact that it could be in her future, and that she'll probably have to be more vigilant than someone whose family doesn't have a history of cancer. Heck, she's got my husband's genes, too, and his family is Cancer Central.
0 -
JenKay, I'm sorry you're having a rough time. Hugs to you.
Coyote, that ornament is gorgeous. What talent! I too would love to see more.
Happy belated birthday Puffin and PinkNinja.
Hope everyone is hanging in there...tomorrow is Friday! I'm planning a Halloween party for next weekend so busy cleaning. I hate cleaning but enjoy a clean house. I've decorated inside and outside so feeling festive. And pooped. Taxol is easier for me but still wears me out. I've been getting pain in my joints too. Oh well, it beats AC...I thought I was going to die on that.
0 -
Jenkay, when it rains it pours right? It sucks that u have to deal with this too. But I'm going to have to believe that things happen for a reason, and the right one is in the future with the new/improved/version 2.0 spectacular you. So big hug to you. It's ok to feel like crap, grieve, for a certain amount of time, then move on to version 2.0! It's all about you and should always be.
Elaine, do u have an elastic or something to adjust the wig in the back? I was having the same problem and I tightened that and now it's good. If you don't, try getting some double sided tape for wigs, that should do the trick. It might be fake, but damn it, it makes us feel better! And personally it's better than my real hair! just painted my nails, dark purple, gel no less! I haven't done it in months and it's probably not good for me ,but again damn it I feel good!
Walle, good luck with surgery, Mags, hope u feel bette, Box, good luck with baby-epi all the way...thank God that exists.
I try keeping up with all the action, but u miss one day and it's over!!! We have exciting lives to keep up with.
I have to genetic testing in Nov. how long did it take to get results back? I hear it's insanely long...year .I'm in Canada remember. How is it in the States?
0 -
Coyote, gorgoeus!
anybody getting hot flashes? These things are killing me. The rush of heat rising along my arms, chest, neck, face, scalp.....feeling those beads of sweat forming everywhere....feeling like I've been in the gym for an hour in mere seconds....I have to rip my clothes off and take off the wig. It's insane!! My mom and sis never complained and now I sound like my MIL!!!! Agh!!!
0 -
taxol affect anybody??
Something weird happened Tuesday evening. I was doing homework with my daughter and I suddenly could not see the writing clearly. It was not blurry. I would describe it as when you look into bright light for a long period of time and then look at something...you can't see it clearly...I was seeing white, grey, black spots covering it up. About 20 minutes later it started getting worse....the same thing started happening to my peripheral vision on the left side. I felt like I was going blind. Can handle a lot of things but not going blind. So I went to bed and closed my eyes, they were hurting. It went away.
nurses see no relation. Maybe it's glaucoma wtf???
So I have contacted onco.
Has anybody experienced this/similarities?
0 -
no BRCA mutations. Looks like the ovaries are staying put. One less surgery to worry about!
0 -
yay JennKay!
0 -
dancingdiva -- RE: wig, yes, mine is adjustable and has an elastic in the back. It stays on my head just fine, but it is a shoulder-length style (no bangs) and I use a barrette to keep the front of my "hair" from flopping in my face while I teach. Unfortunately, my barrette had lost its grip on Tuesday, and I had to go without. But, I just bought some new ones at the store this morning; they should be fresher.
RE: genetic testing results -- I was told that I could get my results back within two weeks if surgery were pending. Well, surgery IS pending for me, but not that quickly because I've got seven more weeks of Taxol/Herceptin/Perjeta ahead of me. But, it still took about two weeks (MO's nurse is pushy in a good way).
RE: your vision problems -- I haven't had any weird vision problems since I've been on Taxol. My eyes have been a little drippy from time to time, but that's it. DH inherited glaucoma from his Mom, but it hasn't progressed much because he takes medication. It's all about lowering the pressure on his eyeballs. He has heard about cases where the onset of glaucoma was quite dramatic -- again, it might have to do with sudden pressure on the eyeballs. Hope that's not happening to you.
JenKay -- Good news! Yes, fewer surgeries are better, if they can be avoided.
0 -
DancingDiva: it took about a month for me to get my genetics test results back
JenKay: congrats on the neg BRCA's, I heaved a sigh of relief when mine came back negative too
those with drippy noses after taxotere & cytoxin, how long before the faucet shuts off?
0 -
Puffin - I had taxotere in my "chemo recipe" and my eyes literally streamed water after the 4th infusion. I had to carry a Kleenex in my hand all the time and constantly dab my eyes. No way could I keep make up on. It took about about 5-6 weeks after the 4th infusion to calm down.0 -
Dancingdiva - I had my genetics test done in Canada and it was a 6 month wait. (That was in 2010 -- things have maybe changed a bit since then.) I couldn't believe it when they redid it here in the US this summer for my clinical trial and said they would have results in 4 days! What the...? Hard to believe that there can be such a huge difference in timelines.
0 -
DancingDiva, my results took about 3 weeks.
0 -
I was on AC, but it gave me some wonky vision things, too. Blurry, but also once or twice I had kind of swirly, out of focus floaters in my peripheral vision. Not so bad I couldn't see, but bad enough that it was weird to walk around with and gave me a headache. It went away after an hour or two, so I didn't worry too much, but I assume it was another side effect.
My genetic testing results (which were all neg) came back in about 2-3 weeks.0 -
Blownaway: it's my nose more than my eyes that's dripping. I try really hard not to drip in the food while I'm cooking, but sometimes walking thru the house I drip on the carpet. Don't plan on doing the annual fall carpet cleaning till I'm done dripping.
0 -
Dancing - Yes, I had the eye issue that scared me silly also. Mine was flashy and all blurry and white. I was told that it is a rare se. For the last couple of months, it has just been runny and fuzzy because of what my MO says is chemo induced dry eye. My genetics testing was done by a Canadian company and took several weeks to get the results back.
I've been wearing my hair in the box a bit because I've been able to get out of the house and the weather is cooler. We went out to breakfast this morning. The owner of the restaurant is a friend of mine and a BC sister. It was really nice.
This is a wonderful time of year here. Our pomegranates are beginning to ripen. We have a small orchard - 48 tree. They are loaded this year and will be totally ripe just when I hit the worst of post infusion crud. We are trying to get friends to come pick a box or two and take them away. I hate to see them go to waste. Our adopted grandson came home from college this week-end to pick some and take them back to school. I love pomegranates and usually enjoy the harvest so much. We have enjoyed fresh watermelon from our field and tomorrow I get to pick pumpkin and squash.
I talked to the owner of one of the galleries that sells my work, and she is having a website created to sell her artists' work. So, I will have work on the web soon. I'll let you know.
Stay well.
0 -
Coyote, I wish I could come pick a box! I make pomegranate jelly every fall. Most years I make prickly pear jelly too, and if there's enough if everything I make a combo batch
0 -
CoyoteNM
Love the ornaments!
Shirley
0
