March 2011 chemo-lounge
Comments
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Fluff - I love it, you are worrying about how long your doctor's will live - that's much better than the other way round
So pleased all clear DeeDee - that waiting bit is the worst.
And having convinced myself and hubbie that life is short and we might as well spend all our money now, we have booked a trip to Antarctica in January. We have to fly from Aus to the bottom of Argentina, then 12 days on an ex research vessel down to below the Antarctic circle. They even give you an option of sleeping on the ice in a sleeping bag one night - no tent.
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Penny, the trip sounds amazing. You are smart to take it, life is short! Since the bc diagnoses in early 2011, dh and I have done a lot of traveling to places we've never been with plans to do more. In the past 3 years I've been to Vegas, Grand Canyon, Nashville, New York City and more. This summer we took an 8 day cruise to the Bahamas. I've seen beautiful places, but that's a different kind of beautiful. We snorkeled, something i always wanted to do, swam with dolphins and took a ride on an airboat thru the Florida Everglades. I also got to hold a pet alligator. Here's a few photos, one of dh and I in front of Atlantis in Nassau and one of DS and I in the ocean off of Coco Cay Island. And the dolphin encounter.
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Wow Divine - that looks amazing, how beautiful is that dolphin too and so close! You are looking great!
Penny
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Penny- Antarctica is one of my dream destinations. I would do the overnight on the ice in a second! Good for you for grabbing your life by the reins and taking one heck of a ride!
Divine- Fantastic! I love the dolphin photo.
A question for those of you who get tumor markers tested (my onc does not test me): my mother is a 7-year BC survivor. She is 72, and I think she must have been stage 1, she had a lumpectomy and rads; don't know the pathology/grade. She has been off arimidex for 2 years now, and her general doctor wants her to start getting tested for tumor markers. She doesn't worry much, but she thinks the tumor markers are more of a hassle than anything. I commented that the decision probably depends on your tendency toward anxiety vs. need information. Do any of you have any insight? Are you tested for tumor markers? Do you know what characteristics led your onc to recommend markers?
I hope you are all doing well. The less-frequent updates must mean everyone is out living life with little thought for BC! That's awesome.
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Maxine,I get tumor markers done when I see my MO. I requested it for peace of mind. I don't get stressed out about it. I usually have to go in a few days before my MO appointment to have the blood drawn so the results will be available when I see my MO.
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I talked mine into it also. the downside is that they dont know for sure what to do with the numbers. For example, my doc tested for ca27-29. My count was 24, I think. In the mid-normal range. The test results can vary based on all kinds of weird touchy things, so my onc didn't put a lot of faith in getting any information that would tell him anything other than having a baseline. He said if you had one that jumped way up, they would have to start looking for things that might be really difficult to find, with no idea of really where to go, and it might not be anything, just a funky test result. Didn't make any difference to me. I would rather know.
I really wanted him to do the circulating tumor cell test, as I know they test for that (and a million other weird things) in the vaccine trial I am in, but we don't see the results. He never did that test and I didn't push it. Not sure it is a standardized test.
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The ASCO (American Society of Clinical Oncology) people don't recommend it for monitoring of recurrence in the same way as they don't recommend any of the scans.
I am not sure I would want this, particularly for your mum at 72. If they find high readings they are then going to be obliged to do all sorts of extra tests, when it may well be nothing at all. I think I would be feeling that having it would be more likely to have an adverse impact on quality of life with little benefit.
I would not want mine done.
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The whole tumor marker thing is of course a frequent topic on the Stage IV stuff. My own personal experience is that they are not a reliable source of info for me. Mine rarely move-and he did do three diffeernt kinds earlier on. Doesn't matter if I am growing like crazy or stable=little change either way. Others seem to have sensitive ones that truly predict when things are going on. So unless you do them regularly how would you know? And the thing is most Oncs wouldn't recommend tx based on that alone-they would follow it up with other testing. They are not expensive to do-it is just a part of the bloodwork they can opt to do when they do your regular draws. The same way for the circulating tumor cell. My guy sent off 5 samples from his patients and they came back and 3 out of the 5 had bogus results-based on the fact we had all had recent scans and he knew where we were at as far as activity level. It is wildly expensive and Insurance companies are loath tp pay for it because again most Oncs would not change a tx based on the results from it so they do other diagnotic tests which results in more expenses for them. My guy says they are just a little too early with rolling that out as a tried and true measure of wether you have something going on. It is certainly the future and the more they do it the more they will be able to refine it. All we really do is scan every once in a while. I used to be a nut about doing it every 12 weeks (that is what insurance will pay for) but now I try to put it off as long as possible-unless the drug I am on is making me miserable. Then I tell him if I am going to feel like crap lets at least see if it is worth it.Maxine, how great that your mom is doing so well. It can't hurt to have them done but hard to say what they would make of the numbers. It is at least painless.
Antarctica???? Just don't get that. My choice every time will always be somewhere warm. And sleeping on the ice??? Really don't get that. But you definitely have the soul of an adventurer Penny so "Good on you". I think it was a research vessel that got stuck in the ice last year and it was full of tourists. They were great television and so OK with all the discomfort and trekking across the ice to be rescued ect. Not at all like the cruise people get when they have a problem. Figure you will fit right in with that crowd.
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Thank you all for the input on tumor markers. My mom is a little less demanding of information than I am (okay, a lot), so I don't want her to just take her doctor's recommendation without having her say. I don't think she has ever tested for tumor markers, so it seems she would have to keep doing the blood work to get some baseline information. She only sees her GP, and getting the tumor marker test would require her to return to her MO, whom she hasn't seen in years. All that hassle will probably work against her getting the testing; and like you said, Penny, she herself commented that it might initiate a lot of extra testing. I will pass along the advice/info from all of you. Very helpful.
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Maxine, my 93 year old aunt was diagnosed with breast cancer seven years ago. Early stage they said, and opted not to do any type of surgery due to some heart issues. Put her on a pill. I never heard officially what it was but I think Arimidex. They told her that at her age, something else would probably cause her death before breast cancer would (not in those exact words) as it was very slow growing.
Since then, she had a bladder tumor removed and some chemo that was sloshed around her bladder, likely due to the number of years she was on Actonel for diabetes (my uncle had the same thing), and a pacemaker put in. She is still kicking at 93, now with stable, but stage IV kidney failure.
All that and they were afraid to do a lumpectomy? Makes me chuckle. But they were right, it doesn't look like it will be the breast cancer that is her cause of death.
I also don't know how they knew any of that as they did not do a biopsy of any kind. Just from a mammo and ultrasound mammo. Can't remember if they did an MRI or not.
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Checking in...can't believe summer is almost "officially" over ! So good to read that the group is doing so well. I had a 6 month check up in July and decided to ask for a a scan...of course that got shot down !!! Guess I'll just be thankful that my lab work and exams are normal ! My oldest daughter who lives in LA was with us over Labor Day weekend- we went to a resort in northern Minnesota along with my husband and younger daughter..so great to have some time together !!!
Life is good !
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congrats Stilts! Since the death of my onc. I am guessing my days of scans are over too. I have either a painful swollen lymph gland or some kind of mass right in the armpit area of the non cancerous side. BS is doing ultrasound on the 30th. I'm trying to see if I can get in in a cancellation as it is seriously stressing me out.
It has been a beautiful summer In indianapolis. Now looking forward to my last vaccine injection trip, then five days in NYC to visit our daughter. Our son and his fiancé are joining us for a 24 hour family vacation, lol. Not exactly the way I had planned it, but Imwill take whatever I can get. It is too hard to schedule around new jobs, etc, lol. Life is good that is true!
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Fluff....let us know how the test comes out. I am praying all is OK.It is freezing here in Chicago! OMG! I am not ready for summer to be over yet.
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I will let you know. They moved the test up to thursday morning, so that in the event it is an infection or something, they can get me started on antibiotics before I leave town. I would love that to be the answer. It was gorgeous here this weekend. Mid-70s and perfect weather.
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all is ok. She felt what I felt, but thinks it is some fatty tissue that is being irritated by a cyst that is there. Of course I am looking at the cyst on the screen turning white and she kept swearing to me, it is clearly a cyst not a tumor. Said it is perfectly round, no blood supply. Said she could drain it if I wanted her too but she would prefer to wait until after the MRI in November when the PS checks the implants at the three year mark. Said she would get with him to make sure they get images of anything else she might want.
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Yah, Fluff!! So glad they moved your test up and the result is good. Happy to see/ hear about travels from all. Antarctica does not appeal to me but it makes perfect sense for you, Penny! I think I'm making a day trip tomorrow to the shore - it's supposed to go up to 82. I hate to see summer leave... Putting U2's Beautiful Day on the jukebox. Happy weekend!
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Hurray Fluff! - the waiting is awful isn't it. So glad everything is good.
Hi Stilts and Silia - its Spring now here, although you wouldn't know it. We had two hot days and now its cold again. Shouldn't moan though - it will be over 40 deg again before long.
Its my grandson's 6th birthday today, I have taken the day away from work to go play! Life is very good.
Penny
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I usually check messages on my phone but can't see the pics so thought I would get on the computer and catch up again. Great pics of you all! Spent the day with my kids...oldest and youngest share a birthday on the 4th, 10 years apart
My dad has been in the hospital over a week with encephalitis-swelling of the brain. Caused by herpes virus that causes cold sores. Probably dormant for years and can pop up later in various ways including this. Temp as high as 104, confusion, dementia, horrible. Finally getting better. Moving tomorrow to rehab facility for continuation of IV anti-virals, 3 weeks worth. Has been very difficult, especially for my mom, but feel like we've turned a corner and can see some improvement. Hard to see parents so vulnerable and ill. The good news is I got to spend time with grandbaby Lily Ruth! Love her to pieces, even if I am way too young to be a grandma! LOL 
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Awesome Husker! Yes - you are too young to be a grandma!!! Baby is adorable! Hope your dad feels better soon.....Fall is in full swing here...it is freezing and windy....all the trees are bright colored though. I am so busy. My website for my business is up so I am working on getting my first sale from the website (other than family and friends!). I am super involved in the PTO at school - I am VP this year. Too busy but all is good!
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I can't believe I am writing this-the whole thing is surreal. I had a scan 2 weeks ago that were the worst results I have ever gotten since my initial dx. Onc left a message on the answering machine that we needed to talk. I was expecting the usual small overall growth we need to change chemos talk but instead he said large overall growth plus suspect cancer in the brain. I never never thought that's what he would say. Overall I have been very lucky with my cancer-not much change in my life-usually tolerate tx well and growth has always been small. In fact, I have never been on a chemo that didn't work for at least a while. Well, apparently this one hadn't been working from the start so it has had 5 months to really get itself entrenched. The part that really isses me off is it has made me miserable all summer to boot. I bear some responsibility as I took a 2 month break in the spring-and I don't regret it.
So I have seen a radiation oncologist and scheduled to see a neurologist and they hope to treat it in the next week or so. I have to do a brain MRI-they did a CT and it just isn't strong enough to pick up everything. Right now I have at least 1 pea sized tumor laying in an area of the brain that causes seizures. It also kind of overlaps an area that-this is his example-say you wanted a drink of water...your brain knows this but the message doesn't get to your arm to tell it to pick up the glass. In my case it would be left sided problems. They are also picking up activity in other area but no actual tumors located. That is why they want the MRI.
So I have known for 10 days and I still can't get myself right with it. Have not told my family-and won't til I get all the info. There are different options-some more attractive than others-but all with pretty nasty possible long term side effects. They are killing off part of your brain so how could there not be? These usually happen months down the road.
If they find I have just a few I will gladly do the Gamma Knife but I have told him if it comes to WBR (whole brain radiation) I may chose to stop treatment. Right now they are still going to allow me to drive but if the surgery doesn't happen soon they will take steps to get my license. The tumor is pea sized but the swelling around it is huge.
The only thing I keep telling myself is that it could have been in the vision or speech part of my brain. I have no symptoms-this was picked up by the PET--eyes to thighs-scan. They will not use the PET to treat brain stuff so that's why we re doing additional tests. Chemo also doesn't really work against brain mets either. I started on a new drug last Tuesday. Crappy taste buds, hair falling out just overall feel like crap. If it doesn't work I don't have much left in the way of options.
I want to ask him if we entering the endgame but was too messed up mentally to form the questions. No tears-just so sick of this whole thing. Have been forced to take off work right now---high voltage electricity and brain tumors not a good match.
On a completely different subject I went last night to a Cirque De Soleil production called Verakai---AND I HATED IT. Found it kind of stupid and somewhat boring and could not wait for it to over. I admired the athletes but it had some really stupid slapstick humor running thruout and a guy that I think was supposed to represent evil made these noises continuously that were making me crazy. I am sick over how much the tickets were--and I will never get those 2 hrs back!!! Am I that out of step with the rest of the world. It was supposed to represent this dreamlike sequence but all I could think of was PLEASE GOD MAKE THIS GET OVER SOON!!!!
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So sorry Lily - thank you for telling us, it must be hard just to write that stuff down. I am hoping its just a few and treatable with the Gamma Knife. You have fought this against all odds and with amazing strength for the last three years - and each time they knock you down you get up again, we are all praying the same happens now.
Re the Cirque production - I went to a show (not Cirque) that everyone had raved about. We left after half an hour - was not prepared to waste my time. I don't think we are out of step - I figure people are too happy to follow the hype and just don't say.
It must be Autumn where you are now - with all those beautiful colours (I miss that as gum trees don't shed their leaves).
Lots of Love
Penny
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Well since I know you are a woman of impeccable taste I feel better about thinking that show stunk!! I begged my friend to leave but she said it surely has to get better so we are staying to the end!!
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lilylady- This is not the news I wanted to read today; I am sorry that you are having to live it. Cancer sucks. In the worst possible way. I hope you are moving along on some sort of treatment plan with your doctors. I have complete confidence that you are going to make the right decision for you in terms of treatment and next steps. I will keep you in my prayers, dear lady.
(*whispering* I have never been to a Cirque production and have always found the concept cringe-inducing--some people love the artistry, I know...my sister has been singing their praises for years. Me? I would rather have a molar extracted)
I hope you are enjoying some beautiful fall weather where you are.
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lily lady, please keep us informed how the tests go and your further treatment plan. We are here for you and wish you the best. I am sorry for your news and keep you in thought and prayer.
Dh and I saw a Cirq show in Vegas. Some of the acrobatic and other stunts were amazing but it had a storyline that I couldn't follow. It wasn't my fav thing we saw in Vegas but I was glad for the experience. But tickets were ridiculously priced for sure.
Hang in there, lil.
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hello ladies! It's been a long while since I have been on the boards. I think of you all often and tell friends how it was you all that helped me so much through treatments.
Lily so sorry for your news. You are strong and have overcame so much that you can beat this too!
Just know you all are always in my thoughts and prayers.
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oh no! Lily, I am so sorry to hear your news. I don't have any words, just that I am sorry and you are in my thoughts too. I hope the next treatment works much better and with less side effects too. (((Hugs)))
I don't know if it was something in the chemo we all took or what, but I had the same experience when we saw cirque in Disney world last year. There were these clowns who basically just goofed around and dropped things. I didn't appreciate the humor at all. We must all have impeccable taste! The rest if the performers were good, but if it was supposed to have any story with it all, it got by me.
Take care everyone.
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lily - I feel like PET scans pick up too much, even things that aren't necessary to be picked up. I'm gonna pray the Gamma knife will resolve this for you. Can't imagine how you're processing all this... I'm so glad you are willing to share with us. Re Cirque, I have the impression that they went a little overboard with the number of different shows they offer. It's all about taking in $$ even if no one will recommend the show. Plus some will convince themselves it was worthwhile because they spent too much.
Nice to hear from various folks including KSMatthews - Don't be a stranger! I'm putting Elton John's "I'm still standing" on the jukebox!
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Lily, think of you often with prayers. Do you have family or friend support nearby? We are here for you online, however near or far. Just wish we could be in Ohio to go with you to those appointments. Take us with you in your pocket. We travel light!
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Lily I am glad you posted an update, but so sad that the news was not good. I wish I could offer words that would make this easier, but I know there is nothing I can say that can take away what you are going through. I can offer my prayers - and I will pray for you every day. I hope there can be some option that will offer something beneficial for you. You have fought so hard the past few years...you deserve a break and some good news. I will never understand this sneaky, disgusting disease that brought us all together. I pray every single damn day for a cure...... Please know that we all will be thinking of you and supporting you here in the lounge. Hugs...... Gosh it's times like this I wish we were all closer.....0 -
Lily-just read about your news...I hope knowing that your fellow March 2011 Chemo loungers are sending positive thoughts and prayers your way will help. We all know you're a fighter !!! I have heard of some very positive outcomes with the Gamma Knife...hoping that is one of your options. Please keep us posted !
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