March 2011 chemo-lounge
Comments
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Fluff-PET covers what they call "eyes to thighs" so it does cover the brain. If they suspect brain stuff they do a specialized MRI. May we never need to know... Thanks for the article. I will discuss it with my guy but I think it isn't meant for late stagers.
I will post my results next week. I am trying to keep the anxiety levels low. I feel so good and look great also but since I pretty much felt the same when i was full of cancer it really isn't much of a predictor. I would love to stay on the Xeloda/Tykerb so heres hoping for at least stable!
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Just wanted to pop in and say hey to the March chemo girls! Today I am 1 year pfc!!!!
Can't believe how much has happened in a year!
Hope all you ladies are doing well and enjoying the summer.
Hugs to all!!!!!
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I know some people have upcoming testing. Trying to remember who is scheduled for today - lily?! Best wishes for clear results for all.
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Sorry to say I had bad scan results today. When they call you 2hrs after your scan you know it's bad. All mets increased in size and activity level and new met found in the liver. My liver had been clean since last Aug. At least it isn't in my brain.
So I look like I will be one of the first to try the new Her2 drug Perjeta that came out June 6. Good news=it is a bad-ass targeted therapy drug. Bad news it is paired with our old friend Taxotere. So there goes the hair and nails and tastebuds. I go Tuesday for my first infusion-they told me it will be a 3hr visit. Yay!! Love that chemo room!!
He says he doesn't think I will be able to work but I hope to prove him wrong-at least at first. I never really got sick til my 5th treatment last summer. The factory has been brutal this summer-averaging 110 degrees daily. And machines hate heat and humdity so we are hopping all day trying to keep stuff running.
So I am going to binge eat everything I can think of this weekend because i know the stomach won't tolerate much after next week. Starting off with fresh corn on the cob and yellow cupcakes with chocolate frosting. Not telling the family til next week. No sense in all of us having a sucky weekend. Pray for me girls and send positive thoughts my way!
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Lily-I am so sorry your scan results weren't better. I am thinking of you constantly and will say lots of prayers for you! Please check in when you can so we know how you are doing. Hugs to you and eat tons of junk food!
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Lily, I am so sorry to hear this. I have heard great things about this new drug, so lets hope it zaps those nasty spots. Enjoy the eating this weekend, have some cupcakes for me! You are absolutely in my prayers.
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Lily - damn, I'm so sorry that you got bad results. Thank God that Perjeta is now available. I'm in awe when you (or anyone) can hold off sharing bad news. I'm not that strong. I really like your plan to binge on some fun foods before the chemo hits you. Yes, Taxotere is a tough one... Just remember you are amazingly strong - so much stronger than these cancer cells. I think you're smart to keep working if possible. Any chance you can schedule another vaca a few months from now? I don't know about you but for me a "dangling carrot" is really helpful. Sending hugs and prayers. Reach out anytime - we may not be as talkative as a year ago on this thread but we are all here for each other! Love you lots!!
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Lily-you will get through this. If you haven't had taxotere before, start taking acetyl l carnitine or l-glutamate to help with possible joint issues and neuropathy. Take lots
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lilylady,
So sorry to hear your news. Certainly, you're in my thoughts and prayers most especially now with this new challenge. I hope the new targetted drugs do their thing. Hang in there. Like someone on another thread said, you don't have to be strong, you just have to show up And I know you're in. (((Hugs)))
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Lily I was hoping for better news. Hugs. I wish I had the right words.....just know you are thought about and prayed for a lot. This has been a tough road so enjoy whatever you can when you can. Please keep us updated. How long will this treatment be and when are next set of scans to check results?
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Oh Lily, I am sorry you didn't get better news. You are always in my thoughts and prayers. You are definitely stronger than the cancer. The new drug sounds promising. Sending virtual hugs and tons of good thoughts your way.
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He has said we will scan again after 3 tx instead of waiting the usual 3 months. I have no idea how many tx there will be. Little out there about that but some trial data I saw said 18 months-surely you can;t do a taxol that long? I am hoping it is like our other stuff-6 tx with the taxol then continue on with the Herceptin and Perjeta.
I will know much more after Tuesdays appt. They said be prepared to stay 8hrs-OMG!! I started a Perjeta thread and there are 2 other ladies who will be doing this also. They won't be like you guys but nice to have company to compare things with.
Ate like a machine all weekend-I feel like a camel-I may not need to eat for a week I am so full. Lots of fresh corn and watermelon and peaches and tomatoes-and homemade yellow cake with chocolate frosting. I lived last summer on grilled chicken and fresh lemonade so I stocked up the fridge this weekend.
Thans for your thoughts. I will let you know later in the week if it's as awful as it was the first time around
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Lilylady - thinking of you and tomorrow's appt. I hope your day is much shorter than the 8 hrs they've told you to prepare for! Godspeed to you. Sending hugs.
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Lily-Thinking of you!
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Go Lily Go!!!!!
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Lily-thinking of you today...hope things went easily for you !!! Have heard great reports on Perjeta...lots and lots and lots of hugs going your way !!!
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Lily thinking of you!
I had scans today, but no news yet. I am thinking no news is good news!!! What has me worried is last time, they called an hour later and told me all was good. So keeping fingers crossed!
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Lily, hoping things went well for you at your appointment yesterday. Lots of prayers and good thoughts directed your way. Yours as well KSMatthews. Hope you got good news too. ((((hugs)))) to all the March chemo ladies.
Silia, hope you're recovering well, especially since I recommended the surgeon. She better have done well for you. (((hugs)))
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Just got the call from my onc and my scans are all CLEAR!!!!!!
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Great news on clear scans!!
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Ksmatthews - woo hoo!!! So psyched for you!!
Kay - yes I'm so very happy w Dr. Wu. She rocks! Just saw her in Monday and got the last drain out. I'll see her in 4 weeks and we'll plan on revisions and timing. Thanks SO MUCH for directing me to her - she's an awesome find.
Sending hugs to all. Thinking Penny's on her trek as we speak - am I remembering correctly?0 -
Hi girls,
Have been away from the boards a few weeks. So sorry to hear of Lily's news, gosh darn it! But we will be with you every day and don't you forget it! Keep us posted as you are able. You show up, we'll send the powerful healing vibes your way. Promise!
Karen, good news on the scans. Glad that is over. It gets exhausting to prepare oneself mentally for the scans, the wait, the news.
Maria, haven't "chatted" with you in ages. Just wanted to tell you that I read through your blog, pretty much from start to recently, last week. I did some journaling and posting on Carepages myself, but nothing very public yet. Am thinking of putting together my carepages into a book or bound journal, just for me. You said many things that I said or thought myself. It reminded me of why I loved you all and this forum so much!
I am looking at being a part of a research study out of the med center at University of Kansas that targets rural women, post-menopausal, post-treatment, early stages (originally) to help with weight loss. I get screened in September. They follow you for 18 months and there are support groups weekly with 7-14 women (by phone maybe?) and they provide some sort of protein shake for breakfast/lunch and you eat portion-controlled meals like Lean Cuisine or Weight Watchers for dinner, plus fruits and vegies. There is an excercise component that starts with 45 minutes of walking-weekly. Sounds like I meet the criteria so far and I definitely need to lose weight. I was a strange one that lost 20 pounds during chemo and it has been creeping back. This seems like a good way to jump start and have medical supervision at the same time.
We are leaving this Friday for Germany. Not packed yet but I have piles of stuff everywhere and little post-its on the computer and mirrors to remember stuff. I will have some Internet access I think, but not much. I'll definitely check back in when I get back and post a picture or two.
Stay cool, y'all. It's 100 here today. 10 day forecast in Germany is 73 as a high. We have some nights where it doesn't get below 73! Can't wait! Especially since they don't use A/C much there, it will be so nice to have some cool days.
Thinking of you all fondly, Kristy (huskerkkc)
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KSMatthews-Great news on the clear scans!! Woohoo!!
Huskerkkc-Have a wonderful time in Germany! It sounds so fun. And cool!
Silia-Good to see you checking in too! Sounds like your recovery is going well.
This hot weather is terrible! A break would be nice.
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Karen- So happy for the clear scans! That is something to celebrate.
Kristy- Sounds like a great study. I gained weight during treatment, and while I have been able to get back to my diagnosis weight, I would still like to trim some more. It's so hard with the hormone meds and the self-indulgence ("I went through CANCER why should I deny myself??"), but I hope I can do it.
Silia-So glad things are working out for you!
Colodisney- I am with you, this heat is brutal.
Lily- Still thinking of you during your first treatment. I am very hopeful for this treatment, though.
I had a breast MRI this week, on my remaining breast and to scan my implant. They called with the all-clear on my drive home from the hospital! I have to say, laying in that machine and having a hot flash and staying completely still may have been one of the hardest exercises in will power. I guess we've all gained a lot of fortitude. When they asked if I wanted a blanket while in the machine, I think I gave her a look like "are you crazy?!?" Blankets, turtlenecks, pullover sweaters...all a part of my past now...
Stay cool ladies!
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Well ladies it has been an emotional roller coaster very similar to the intital dx. First the bad news of the scan which was balanced out by the idea of getting the new drug. Then I find out I don;t get the new drug because I do not fit the narrow parameters under which the FDA approved it-but we will appeal and it looks hopeful. Then find out the ins co says if I fail on my remaining 2 chemo options or I am in imminent danger of dying they might consider it. So first dose was supposed to be Tuesday of this week, then it got pushed back to Fri (tomorrow) and that isn't happening either. latest appeal denied becasue the drug hasn't been assigned some stupid number they can code it under-how is that my fault? or problem?
Latest news is i went to see my guy and he is going to pay for my first tx this coming Tuesday. All docs in their practice have a slush fund they can use for whatever reason they want even if it looks like the money may never be recouped. He thinks I am a great investment. I was very touched and humbled. I knew I was his pet but this blew me away. I had no idea they could do that. Meanwhile this buys them 3 more weeks to try to get this thru. Genetech has contacted me and I have filled out multiple papers from them. Of course it is in their best interest to get this done-how else will they make their money back. The onc practice has a specialist in this area also-tricking the ins co to pay when they don't want to. Also my ins rep at work is on it. Hoping the combintion of the 3 will make this happen. Lots of people are in the same boat as me-2 ladies so far joined the thread and are getting the drug.
So one more weekend to enjoy my tastebuds. I am headed for the peach orchard tomorrow to get a basket of them as well as some more corn on the cob!!
Karen-so glad for your good results. Time to put cancer in the back set for a while sounds like.
Kristy-have a great time. Germany is one of those food countries I have always wanted to visit. Can't wait to hear your stories although I don't envy your plane ride. Seems like air travel is just a series of rude encouters then a lousy seat in an overcrowded plane. I hope you are going first class!! You get the champagne cocktail while the economy class slugs are still straggling into the back of the bus-and even if you are one of the slugs you will still have a great time.
Silia-oh happy day on the last drain coming out-I still say that drains were the worst part of my whole cancer experience. You were so lucky to have a good doc recomendation by someone you trusted. I hope the next step goes as well.
I appreciate all the cheerleading-figure I am going to need it. They put me in touch with a nurse who was part of the trial and she said it seemed like people either got really sick or it barely bothered them. I usually fall into the latter so heres hoping. biggest complaints were the hair and the fatigue. Nurses at the onc practice went to Perjeta school this week. Italian food, wine, door prizes-they were all psyched. I reminded them that they might at least listen to what's ahead for us. I am the first in the area to get this outside of trials.
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Lily - Thank God for your doc!! Yea, you've always said you're his pet - I'm glad it's paying off!!! Insurance comPanies can be so frustrating. That's why I'm glad healthcare reform was upheld! Enjoy your peaches and corn - you deserve that and more. Keep us posted.
Kristy - jealous of your trip. Haven't been to Europe in a number of years (and never to Germany...). Enjoy!!0 -
Thank you all so much!!!
Thinking of you all!
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Lily, sending healing energy your way and hoping you are in the latter category of few se's. We will keep this board energized and active and help you through this.
I finally wore my Onc down and get to have a pet scan. He said if I have a pet scan, I don't need a bone scan. Don't know if that is true, but opted not to argue with him and just appreciate that he finally ok'd at least one scan.
I finished session 4 of the initial 6 in the vaccine trial last week. It was pretty itchy this time, but better now.
We finally received a little rain, but it is still hot and humid. Glad I am not wearing a wig this summer. Last summer was bad enough.
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MD appts this week...went to Mayo to follow up on their vaccine trial...the one I am suitable for won't get off the ground for another 6 months at least...I am on the waiting list and the first group will be picked by "lottery"...never won at the lottery before so I think it's my turn !!!
My only complaint right now is a rash that comes and goes on my abdomen and up my neck...one MD thinks it might be related to the Arimidex shutting down the estrogen so I have stocked up on hydrocortisone cream !!!Participated in neighborhood garage sales this weekend...where does all this stuff come from ??? Good feeling to get some of it out of here and a little extra change in my pocket !!! I have promised myself whatever is left gets boxed up immediately for Goodwill drop off !!!
So tired of the heat and drought...my poor little garden is suffering...but then in only a few months we'll be getting ready for snow !!!
Lily...think of you every day
Take care
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A lady on another site just posted her insurance bill for her first treatment of Perjeta and herceptin. They billed the perjeta at $27,900 and the Herceptin at $17,900. And I am getting Taxotere with mine as well as the pretreatment drugs.
Cancer is making somebody rich!!
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