March 2011 chemo-lounge
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Had another 3 month appt. with my ONC yesterday..,.they called today to tell me my Calcium is slightly elevated (10.5) and I should have a re-check in a month...lucky me, a month to worry !!! From what I've read, it COULD be a bone met indicator...I've been taking Calcium and Vitamin D daily...guess I'll drop the dose on those. Got a definite NO to Metformin and the lab that does the BART genetic testing called to tell me my insurance won't cover it !!! Great week so far....
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Checking in to see if anyone heard from Lilylady too. Thinking of you Lily.
Stilts, I know how you feel. My liver function was high on the last blood test. Probably the f):5;ing tamoxifen, but could be cancer. At least I only have to wait until Friday to be retested. I'm sure your next test will be fine.
Will check back in again soon.0 -
They don't do blood tests at all on me - haven't had one for 9 months
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The results are in. My onc is pleased-I am less so. It was a mixed bag. Some tumors got smaller and less intense and others grew. Also, 2 new ones popped up. I haven't had anything new since the beginning. I have been dealing with the same ones since last March. Mine are all in my lungs and in lymph nodes in the chest and throat.They also show some concern over an area they thought was due to my radiation but it is showing some wierd changes that don't correspond with what they usually see.
Good news is the biggest 1 in my throat shrunk the most and dropped a whole lot in intensity. Also my liver is still showing clean. So for now I will stay on the Xeloda and Tykerb til the next scan. Thete is a new HER2 drug up for FDA approval on June 8-I am hoping to stay on this combo til then. I am able to work while doing it. 1 week out of the month is gross but the rest of the time I fell pretty normal. I am having trouble with what they call Hand/Foot syndrome or in my case it is finger/toe syndrome. Still not as bad as it could be. Also down 35lbs-I lose about 7lbs per cycle. Entering uncharted territory in clothing size.
I really let this last scan work on my head-going to try to do better about that. It kind of shrank my world down to just cancer-like in the beginning. I know you all remember that feeling. Up til recently I really had thought I had made cancer 1 of the smallest areas of my life.
Stilts-I have done some reading recently that having good calcium levels was as god a prevention from bone mets as taking some of those bone pills. I can;t keep my calcium and psotassium levels up high enough so I am gagging down giant sized pills of those twice daily.
Thanks for all your kind thoughts-you guys are the best. I pray every night that the chemo lounge ladies stay healthy.
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Lilylady...good to hear from you...I'm celebrating those tumors that shrunk, your marvelous healthy liver and it sounds like you will keep on fighting the rest just as you've been doing so amazingly !!!. I am feeling selfish worrying over my stupid barely higher than normal Calcium level but all this crap does put your focus back on the fy6!ing breast cancer again...ugh. There were many days recently when I didn't even think about breast cancer...now I'm starting to wake up in the morning again and it's the first thing I think about. One thing I know for sure is that we're all fighters...especially you, Lily,....so let's all keep up the good fight ladies !!!
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lilylady, please know you continue to be in my thoughts and prayers. I hope as you get further from this last pet scan you can shake off some, most, of the feelings that come from going thru that process and hearing results. My next scan will be in the next month or two. I have good days altho lots of achy joints from the antiestrogren pill i have to take, and so that slows me down and i am gaining some weight. The boards sure help with moral. Hugs and prayers to you, always.
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Lily, I am also celebrating the good news with you. I wish it had all been positive though. Thank you very much for keeping all of us in your thoughts and prayers. You are always in mine as well. Thanks for the info on the new her2 drug. That sounds promising. You sound strong as ever. I am inching my way back to work. You really inspire me. Good for you for being able to work through the treatment. Hugs to you.
Hope your scans come out well Mrs. M. You're in my thoughts and prayers too.0 -
Lily...so glad you posted. We have all been thinking about you. As everyone said, we are celebrating the positive, and saying prayers that the meds help the other stuff.
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Lily - I'm glad for the good news and will say prayers that the other spots shrink to nothing. God you've lost a lot of weight but this isn't the way you'd want to do it... I especially love Divine's sign off quote - "always someone marches brave here beneath my skin". You are personifying that!
Happy to hear everyone's input, sorry that some of us have testing stress. Ugh. Signing off but sending hugs to all.0 -
Lilylady-So glad to hear some positive news from you! I think of you each day and admire your courage and strength.
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Has anyone heard from Jules?
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Lily - if your onc is pleased it is good news - we are all now sending thoughts to shrink the other ones.
Mrs M - everything crossed for the scans
Hang in there everyone, keep fighting this damn disease and find happiness despite it.
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In Las Vegas, done my two conference presentations - time to party!
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Penny, what do you like to do in Vegas? My DH and I are going for the 1st time this summer. We'll take a trip to the Grand Canyon & Hoover Dam, and I want to zipline in the old Vegas.
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Old Vegas is great - take photos with all the "celebrities". Grand canyon is not to be missed but the trips don't stay for long - we stayed overnight rather than doing a day trip which gives you so little time at the canyon. Catch a Cirque de Soleil show, they are amazing. We also went to the Titanic exhibition.
We have now moved on to New Orleans for a few days - went to the Jazz festival yesterday, cemetry/voodoo tour tomorrow, and a tour of the swamps on one of those air boats. - so much history here.
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Penny, did you have any trouble with the flight? If I remember you have some lymphedema. I know it is a long way from your place to ours and I have read it can cause flare-ups. Sounds like a fabulous Vac-watch out for the gators in the swamps. There is a stupid reality show called Swamp People that my brothers and nephews are addicted to-they forced me to watch an episode yesterday. I think I would rather deal with a gator than one of these reality show idiots! Eat lots of that Creole food-I love that seasoning.
I am looking forward to a chemo break. I told my Onc I have been doing this for 15 months and I want a month off to garden and vac and eat whatever i want. He was very supportive of it and overall what the heck difference can it make?
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Lily...how about the show where they catch catfish with their hands. That is the craziest show I have ever seen!
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I wore my sleeve on the flight - and it does not seem to have made it any worse. The airboat trip this morning was awesome - and we have had great fun just cruising the french quarter and visiting little bars and restaurants. (My alcohol limit may have been a bit challenged this week)
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Penny: I am so glad you are having a ball in New Orleans; I love that city. I think anyone's alcohol limit would be challenged there, so just enjoy! I wore my sleeve and gauntlet on a flight to Europe; the LE specialist told me to wear it 10 hours prior to the flight and 10 hours after the flight. It wasn't too uncomfortable except on that webbed area between thumb and forefinger...that was REALLY sore.
Lily: glad you are going to take a little break and enjoy your garden. I'm sure your doc will get you back on to the chemo...won't let you get too far away.
I visited my MO for my 6-month visit (a little early) and asked her about scans and tumor markers (she doesn't do anything) since so many of you get scanned frequently or get blood tests. She said that they don't believe in doing those because of the anxiety caused anticipating upcoming tests or waiting for results. She said that if symptoms of mets show up, there is no difference whether they are found after becoming symptomatic or prior...no difference in length of survival. I know there have been other discussions on this, just thought I would share my experience.
I hope you are all doing great and enjoying life! I hope you are all feeling SO much better than a year ago!
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thank you Maxine I was one worried my dr was not doing enough scans. This makes me feel better!
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Last night in New Orleans, heading home tomorrow - travel time will be a total of 38 hrs from leaving the hotel to getting home, thats 25 hrs in the air and the rest waiting around or in taxis.
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Wow! That's a lot of travel time, penny. I hope the trip was worth it. Safe travels!
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Maxine, that is what my onc says, also. I told him the anxiety of knowing nothing is worse for me. I am wearing him down.
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My onc said exactly the same thing - I have looked up alot of the supporting research papers too and they do support it.
She also said that if you have the scan and its clear it only fixes the anxiety for that day and then you start worrying again, so there is no point just to relieve anxiety
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As a Stage 4 I will always get regular scans ( every 3 months) but for us it's a matter of seeing if our current chemo is working. When i got the Jan scan I wasn't worried at all becuse I thought I was 1 scan away from being NED. My scans had always been positive each time inching closer to no cancer-when we saw the runaway train the Jan scan was I started counting the days til the next 1. Since it meant changing drugs and your brain says if we wait 12 weeks and then find the chemo isn;t working I am 3 motnhs down the road with growing cancer. When it got close to my April scan I was sick over it for weeks-I talked and thought about it constantly. My whole world narrowed down to that 1 stupid test. I swore then that I was not going thru that again. Cancer had not been ruling my life until that 1 bad scan-I tell myself it is what it is and just live and try not to dwell on it.
I had told my onc before the scan I wanted a month off no matter what the results. Then my brain started saying-if it's good do you really want to chance it---or if it's bad do you really want to chance it??? So it makes you crazy either way. Anyway 10 days off chemicals and I feel like the old "me". A walking appetite and boundless energy. Dreading June already when I have to start up again-see there I go worrying about June instead of getting the most mentally from May...
I guess what I am telling you guys-they are totally right about the scans. Doesn't matter if it's big or little cancer-they treat it the same way. I intend to try not to sweat the next 1 because you can't live your life in 3 month segements. Remember our every 3 week chemo regime-you started counting the days til you had to go back-it;s just no way to live, Don't borrow trouble guys. Be confident you have done all you can and put the stuff as far away from you as you can.
I hope this doesn't sound preachy-it wasn't meant to be. And I certainly understand and sympathize with your anxiety just thought I would spit this out.
Penny-38hrs travel time-makes me sick thinking about it
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And by the way-I have a full big head of hair!!! After 14 months it's about time
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Lily, congrats on the hair!!! Mine is very thin, but finally growing. I think I actually need to get it trimmed a little around the ears and neck.
And thanks for the words of wisdom. I needed that.0 -
Lily...reading your post does make sense. I know that in my heart, but my brain hasn't bought into it fully yet. What if you hadn't had the January scan and went three months with nothing. Couldn't it be too late to try something? I have serious "fear of the unknown!" LOL
Penny-my onc also says that if I had the scan, I would just want another one in a few months. I don't know. I had the ct scan in November that covered my midsection, due to y kidney stone, and they checked everything. I am still perfectly happy that it was clear. (I can wait a year! hAHAHA!)
I am at Wake Forest in Winston Salem NC., starting the vaccine trial I am participating in. It is a peptide vaccine that will hopefully prevent a recurrence of HER2+++ . They are testing early stagers and I met the criteria, so I thought this might be my way to help. At the least, I get an immune system boosting drug, or I get the immune boosting drug with the vaccine. It is kind of cool.0 -
Thanks, Lily...I appreciate your words of wisdom, too. I am finally officially wigless !!!...feels great, very fine hair but CURLY !!! We are headed out to L.A. for the weekend for my older daughter's graduation from law school ....the ceremony will be on Mother's Day so that kinda makes it extra special !!! Am enjoying working in the garden...found a Komen garden flag today and planting a lot of pink flowers...sounds a little corny, I know, but I'm celebrating how much better I'm feeling than a year ago !!!
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Hi girls! SO nice to hear some updates. Glad you are all doing well. A year ago last week I finished chemo. Can you believe that? In some ways it seems like yesterday but in other ways it seems so long ago. At this point I am finally finished with reconstruction - I got my tattoos today! Crazy. Never thought I would get a tattoo, but then again the last 17 months have provided a lot of "I never thought I would....." if you know what I mean.
I think of you girls often and remember all the chat a year ago at this time. I hope life is better at this point for all of you. I am getting a little better at not obsessing about BC 24/7 and hope all of you are too. It's always in the back of my mind, but at least it's not the only thing I think about all day anymore.
Overall - things are good a year later. My son lost his first tooth last week and started baseball a few weeks ago. I am staying busy and enjoying the new house and gardens (tons of perrenial flowers are coming up everywhere!!!).
What is better in your life than a year ago? Are you obsessing less about BC? Just curious how things have evolved for each of you.
Hugs my dear chemo lounge lizards!
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