Can we have a forum for "older" people with bc?
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Julia,
Lots of things can make the Ca marker test react --- and its considered I think more when there are other indications of things going on so it is just my assumption that you have no other signs of anything amiss. I guess I'd feel better if your Oncologist/nurse ????? had maybe discussed this more with you.
Arimidex is the "newest" hormone inhibitor drug and it seems the majority of oncologists tend to use it. If you have a lot of side effects they will switch you, but all these drugs have them and sometimes I think it may be easier to try and find ways to minimize the effects of the one you are on if possible. Sometimes it is not.
Hope you all have a really good day. Know I am thinking of you.
Hugs, Jackie
Forgot to say --- only peoplewho have not had chicken-pox get shingles, and it CAN'T be passed unless you are in the throes of an active outbreak yourself. Once the blisters have scabbed over and no longer draining all is fine.
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For anyone in early outbreak of shingles.... watch carefully for any blisters on the tip of your nose. That is a sure sign it will spread to the eye and that is both very painful and sight endangering. So get to an ophthalmologist if that happens. It is uncommon fortunately.
Wishing you some relief.
pam
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oh, SV - I am so sorry for your predicament. Surely you have a friend who could house you for a few months? I thought you were married and had a DH - who is the guy on the boat? Is there not a social worked connected with the cancer centre to talk with? I know there is at my clinic.
Shingles - I understand you CAN get get shingles even iof you have had chicken pox. That said, there is a vaccine/immunization for shingles now. I plan to check into it when I get home in the fall.
Will see the gyne doc on Tues so should find out more about this fallen bladder and uterus. Aren't we all a bunch of crocks - one can only laugh - who would have guessed this a few years ago.
xo
C
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There is a vaccine for shingles --- but shingles is a "form" of chicken-pox and if you have had chicken-pox ( usually large outbreaks come during childhood ) you will then have built up a natural immunity to them. People can mistake chicken pox if they have as I did, a very mild case. At that same time I was also flat on my back in bed with rheumatic fever which the Dr. in my very small town was not sure exactly how to treat. I helped a lady during my chemo txs who had active shingles so I feel confident about my information. That being said --- with millions of people in the world and all sorts of bodily differences and reactions.....there I'm sure could be a rare occurrence.
Wishing you all well --- especially those who undergo this most painful medical malady.
Hugs, Jackie
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Caroline - you are right. We can only laugh at ourselves! Never in a million years did I think things would be like this, but I'm such a ridiculously optimistic person that I believe I can get things back to where they are good again. I pray that it's not just me being unrealistic again.
Oh, who am I kidding? I just finished having a good cry! Wow, emotions certainly run the gamut now, don't they? It's probably not the time to mail this letter I wrote to my mother - LOL - but she's mean as a snake and I've got to get this off my poor, cancerous chest. SV - our parents should meet. Probably a match made in hell.
Thanks for all the info on shingles, everyone. I had no clue I needed to be so careful about this crap. I just caught myself using a pen to scratch my back - ugh! I feel like I need to wear mittens so I don't subconsciously touch my face. This is so miserable - where are my drugs??
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Jackie and Julia, no one has even mentioned a Ca marker test to me. Julia, are your markers a concern? What is it and is it something i need to incorporate into my routine. And yes, i had chicken pox and still got shingles and transferred it to my Mom thru sweat (i must have had an outbreak going on and not known). Mine 'hides' in the base of my spine and when I have and outbreak O Lordy, the pain in my lower spine is terrible. Nothing knocks it down. And Bcamb thanks so much- I had decided not to do a BMX bec I simply did not want it-but meeting with him truly has changed my mind-or has me thinking in another direction. I mean to have a guarantee of 100% that there is no more BC is a pretty convincing argument (The issue is that i cannot get off prempro-my treatment team and i have tried desperately) and i tried years before i was diganosed with BC. But, i have looked for a home for two years with my poor credit-nadna. i am on several housing lists-nada-trying to find a rental i can afford that will take poor credit and two dogs-nada. last option might be friends in the church who may want to open their home up-but that feels like such a huge imposition. Truly i do not know what to do and have been struggling with the 'home' issue since i was diagnosed-so i don't know where else to look and keep praying for options. And yes, honey, I too have the fallen bladder and uterus-Good Grief is NOTHING spared us??!! Many of my friends have had 'slings' strung up inside to lift the whole carriage. Crikey between the face lift and the butt lift-i just don't know anymore! Love, SV
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HeartnSoul,
I did a little shingles refresher, so I could share here. It is a reactivation of the chickenpox, which lies dormant in the body and is triggered during stress/ states of low immunity. Today's kids have the option of the chickenpox vaccine which we did not have growing up. The chickenpox vaccine should protect against shingles later on in life, not a guarantee (I have to do a bit more research on vaccinations...but yes, there is a shingles vaccine for 60 and over.)
I was started on Valtrex which does help lessen the symptoms some. Pain meds are commonly needed, as the virus hangs out along nerve tracks and nerve pain is really horrible stuff. Shingles present on one side only, along specific nerve tracks which a pain specialist (Anesthesiologists) can identify and target. They administer short and long acting meds like lidocaine, buvacaine and steroids in order to block the pain and decrease the inflammation along the nerve root. Some people do suffer nerve related pain even after the blisters are gone, which can be helped with lidocaine patches, more blocks, and meds like neurontin.
When there is active blistering with fluid leakage..this can be infectious to those who have not had the chickenpox....and pregnant ladies should NEVER get near someone with chickenpox or shingles if they have not had chickenpox.
The way to get the blocks is to be referred to pain management. It's not always easy to get in to see an MD due to the high demand...but if your Onc/MD agrees this might be helpful, they could "fast track" you.
pj12345 makes an excellent point regarding shingles/blisters near the eyes. This is considered a medical emergency and should be evaluated immediately.
I'm so sorry you are going through this. Just insulting.
I hope this helped...
traci
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Tumor markers are substances that can be found in the body (usually in the blood or urine) when cancer is present. Along with other tests, tumor markers can be used to help show if cancer is present, to determine the type of cancer, and in some cases to help show if treatment is working. Some of the more common tumor markers are discussed here. Click on the topics below to get started.
Early on, the hope in the search for tumor markers was that someday all cancers could be detected by a single blood test. A simple blood test that could find cancers in their earliest stages could prevent the deaths of millions of people. But very few tumor markers are useful for finding cancer at a very early stage. There are a few reasons for this:
- Almost everyone has a small amount of these markers in their blood, so it is very hard to spot early cancers by using these tests.
- The levels of these markers tend to get higher than normal only when there is a large amount of cancer present.
- Some people with cancer never have higher levels of these markers.
- Even when levels of these markers are high, it doesn't always mean that cancer is present. For example, the level of the tumor marker CA 125 can be high in women with gynecologic conditions other than ovarian cancer.
These reasons are why, today, tumor markers are used mainly in patients who have already been diagnosed with cancer to watch their response to treatment or look for the return of cancer after treatment.
Many other tumor markers have been found in recent years and this remains an active area of cancer research.
I copied this info as I don't always explain well as I talk from my heart rather then my head most of the time and lose some of the focus that should come with the information.
A lot of Dr's won't even use these as generally it is upsetting when you know the parameter numbers and know when you are OVER them. I tend to look on the bright side and feel that while you may get REALLY shook up for a bit --- you generally do find out that something needs some looking after. So far, my markers stay around 14 or so. Of course -- when this happens you are jumping for joy as not only are you not as concerned as you might be --- you don't have to worry about the Gyn problems that may have triggered higher numbers. I tend to want to be as positive as I can and try hard to not "go to pieces" because something is not right. I succeed more than I fail -- thank goodness. It is a great game I play with myself -- how to win -- even when it seems like I might not.
You are all fantastic ladies -- stay strong and be the winners you are.
Hugs, Jackie
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traci - Thank you so much for all that information! It is a HUGE help for something that has been confusing me! My pain is manageable, but with this being Thursday, and with my luck - well, I just hope the pain stays like this. I'd rather suffer than go to the ER over the weekend. I'm supposed to see my onc on Tuesday and she will decide then if I can have my 3rd TC or not. Maybe she thinks my case isn't so bad? Then again, she was doing a lot of "oh, dear-ing" too. And, crap, my forehead keeps itching. I keep checking it out, and don't see anything, but it's worrying me.
Jackie - I didn't know all that about the tumor markers. I don't even know what mine is. I did ask my onc once about it - she just said we check it at the beginning of chemo, then we'll check it again after you're through. So I guess I'll find out then. I want to learn your game - it's a good one. I think a positive attitude, especially with cancer, and even if you're naturally optimistic, is something that needs to be worked on to maintain. It's worth it. I need to work at it right now.
I learn so much from you guys! I'm always better prepared to talk to my doctor after coming to these boards. All of you and these boards are such a blessing! Thank you!
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Thank you Jackie, Heartnsoul, Granny. SV, Jackie has explained the tumor markers very well. I used to get a CA125 drawn every year as my sister died of ovarian cancer, also had breast cancer and I had breast cancer 18 years ago. That marker is also slightly up for me but my new marker, CA27-29 was first drawn in February and now it's 9 points higher. I asked my nurse again if she didn't think this was significant and to bring it to onc's attention. She said that inflammation could elevate it and since I have had 3 major surgeries since December, not to worry about it. So why worry, right? Another little sitiashun ... the test from a little something in my throat showed no bacteria. So I was advised to see an oral surgeon for biopsy. My bf is dealing with a very serious health issue, I can't even bear to think about. When it rains it pours as they say. If anyone could spare a prayer out there, I sure would appreciate it. Thank you, Julia
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ps Have a great weekend everyone! btw, Isabella, I'm sorry I started calling you Isabelle, I think it's because they play that great song "Isabelle" many times a day on my pop latino net station, RealPlayer. Jeannette, Jackie, it's the only internet streaming media I can get, no videos, no other radio stations. But I think this one is the greatest. Rock on or salsa on whatever the case may be. Ciao for now.
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julia you are always in my prayers.as all of you are
heart i think you got all the info you need.i forgot if anyone told you it is contagous.the nurses in the hospit would not come in my room.i was in isolation.
SV hang in there.there is a light at the end of the tunnel
oh my my sistas need a group hugggggggggggggg.and a piece of chocolate.
i went yesterday to get my medical records.they are gonna mail them to my internist in 10 days.
God bless all of you.all my love
K
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Julia, prayers for your bf and you.
Well, back from my road trip. Wondering why (since BC), every trip I have taken has resulted in a minimum of one late flight. And by late I mean 1-2 hours. Yesterday was supposed to get home at 10:15. Midnight. Last week the trip there was 2 hours on the tarmac and the trip back was 1.5 hours on the tarmac. Am I jinxed? I kid you not, since I finished rads 7/9, I have take one trip a week with at least one leg being late. Sorry for the rant but it is really strange.
Question re: lymphedema prevention - my flights are almost always < 2 hours so I have not been fitted with a sleeve. Occasionally I have one that is 2-1/2 hours. I do exercise every 10 minutes during the flight to keep the lymphs moving. Any advice on if that is enough or should I just go get a sleeve? I have to schlepp my 45 lb computer bag, an overhead projector plus my overnight bag, Wonder how hard the schlepping would be with a sleeve and gauntlet on.
All my "older" sisters, have a peaceful weekend.
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BarbaraA I have mild lymphedema and wear the sleeve as needed. It goes in one piece from the top of my upper arm down to a partial glove. When I travelled last year I wore the sleeve on the long flights and short flights - and will again for this fall's trip. It is absolutely no trouble at all to wear and continue to do whatever you are doing. In fact, for me, it's a comfort as it reduces my worries about my arm swelling up. It was a surprise to me how little effort it was to put it on. I have no idea if the exercise you are doing is going to do the trick. Apparently lymphedema has no favourites and can emerge any time even years after surgery and some people never get it.
As much as possible I don't carry things on that side, put the shoulder bags on my good side and make sure all my bags have wheels so on the flat they don't have to be carried.
That sounds like a lot of schlepping! Is there any way to have a lighter computer and overhead projectors in place where you are going?
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lassie, I have to have the computer. It is a big mamma-jamma with tons of horsepower, which I need. The stupid power supply is bigger and heavier than a brick, that's where a lot of the weight comes in. I don't carry the stuff, except from the plane door to the seat, I roll it. The overhead is light so no problem. My overnight bag is very light as well, as I usually only do one night away.
You're right. I shouldn't take chances. I will get an Rx for a fitting when I see my PCP next week.
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ah yes - I know what you mean about the stupid power supply thing. I have a little notebook computer for travelling and the darned power supply thing looks like it could power the plane. Glad that you are rolling too! I wish you no lymphedema ever!
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Julia, prayers from the hills of NorCal, coming your way.
And to all, best wishes!
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Jackie, I cannot thank you enough for the info on tumor markers. Geesus, my own onc/ surgeon has never mentioned this at all. I am just fruious. All he told me this week was to 'watch for anything unusual.' Crikey, everything seems UNUSUAL! My Foobs feel totally different and I am not dealing with neuropathy in the fingers-so i cannot feel alot. Thank the Lord for you all here on this thread. Short note this afternoon-love to all, SV
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Jackie, I cannot thank you enough for the info on tumor markers. Geesus, my own onc/ surgeon has never mentioned this at all. I am just furious. All he told me this week was to 'watch for anything unusual.' Crikey, everything seems UNUSUAL! My Foobs feel totally different and I am now dealing with neuropathy in the fingers-so i cannot feel alot. Thank the Lord for you all here on this thread. Short note this afternoon-love to all, SV
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Spent all day yesterday in Laguna Beach...fun place
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i dont know if this will help anyone but i was just on FB and saw this on my friends wall.her sister is 38 yrs old fighting pan can.this site is called http://saraleeandcarol.org to help people with cancer get treatment when insurance blocks access to care.I hope this helps someone.i gotta post it on a few more threads and i gotta run.ill try to check in over the weekend.
hugggggggggs
K
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Hello Everyone,
It has been a while since I have been on this thread. Hope that you are all doing as well as you can. I have a dilemma....... I will be 2 years on Femara in January 2011. The last couple of days I have been having extreme pain in my legs. Both upper and lower. So bad that last night it kept me awake. I called the oncologist office today, the nurse told me that it could be the Femara, but the only way to tell is to go off of it for a week. I am afraid to do that, but she assured me that going off of it for a week or so would not be harmful. Has anyone else had any of these problems ????
BarbaraA, I wear a sleeve when I fly. I was told by my oncologist that I should, just to be on the safe side. I also live in FLA and they told me, that if I was going to be out in the heat for 3 or more hours I should also wear it. By the way where is Treasure Island FL and how do you like it there.
Hugs and prayers to you all.
Cindy
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Hi Cindy. I know where Poinciana is. Been through there on the way to Gaylord Palms. Treasure Island is off the west coast of St Petersburg. Clearwater to the north and St Pete Beach to the south. Love living here. We're on the intracoastal about a mile from the beach. Thanks for the advice on the sleeve. Will get an Rx Monday.
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Hi Gals! I'll try this again! I lost one whole post, just trying to include a funny picture, & when I minimized this page, I accidentally lost the whole THING!
Onward & upward! SV....Are your "foobs" your boobs? Isn't that what we call our "play" ones? When we have our boobs lopped off? At least that's what my friend calls her one "foob"....I think it means fake boob! She is also the one that has to hunt her "foob" down, because her dog thinks it is his toy! 
And SV....honey, you KNOW you can't expect ANYthing from your Father! I woudn't even try! To expect him to give you anything, is just dreaming. You shouldn't make yourself miserable....And just figure out how you can get OUT of there, or else learn how to live with those two, the easiest way possible! Nothing is going to change there..... and yeah, that link you told us about is just hysterical! Can you post it again? Those women who have gone through soooooo much, & can still find humor with all their chemo, pain, mets, etc, are so inspirational! I wonder if they know how upbeat they are? I love that link! I consider myself so lucky, & blessed, & everything else, after reading about our Sisters....I will never complain again!And Isabella....You have Sloe berries? You know, I thought it meant that when you add it to orange juice, instead of vodka, it is not a screwdriver, it is a "slow screw"....and I, being so naturally naieve thought it meant that it just "worked slower!"....Ha, ha!
That still cracks me up when I remember that! We've been watching "Cosmo".....a cute little Cocker, that has taken over our house! This little dog is RAMBO!!!! EVERYthing is HIS!!!!!!!!!! He owns not only all his toys and blankets & pillows, , but our little Lacee's toys, her bed, & OUR bed! He is going home today....SOOOON! This little rescue Cocker is sooooo territorial....He went after my DH's shoe, (with his foot in it) because he "moved" one of his bisquits! And he bit my arm, accidentally, because I was trying to put "his stuff" into one orderly pile! No problem....just a few bruises now....His "Mom" said he had to fight for his food & toys at the rescue house, because he was the smallest of 4 rescue dogs.....So that gives him some leeway, I think! But he growls when I try & move around in MY bed! I feel sorry for him, because he can be so darn cute! At least he is "nice" around our Shelty! It's like he is RAMBO, & she is Miss KITTY! And he has this "gas" problem....Man, O' Man! And I don't think he knows he has been "fixed"....EVERYthing in this house is his "girlfriend"...I try & stop this behavier, but all I can do is remove the objects, & "change the subject!" Whew! He is sleeping now, like an angel....but soon, he will be back with his own Mommy & Daddy......See, THEY watch our Dog when we go to Orlando, so we don't have to put her in a kennel....So we HAVE to watch him....but 9 days is about IT! Ha!
I have now washed 5 loads of clothes, bedding, blankets, etc! And our bedroom is OFF limits until he leaves!
Okay girls.....I just had to vent! Thanks....I feel better now....xoxoxoxo
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grannydukes - I found out about the contagious part the other day when I went to the doctor for her to confirm shingles. They took my blood pressure then wiped down the cuff, told me they would have to wipe down the entire row of seats where I had been sitting because they weren't sure which chair I was in - basically just followed me around with a disinfectant. Sheesh! Oh, well, better safe than sorry and I would sure hate to give it to any of the sicker patients...
Barbara - I had an aunt that lived in St. Pete; I remember Treasure Island. Always liked the name when I was a kid, it reminded me of pirates and cool stuff like that. Loved visiting there and it has been too long. I still have relatives in Tampa, I should take my son sometime - it's beautiful there!
Chevy - haha, when I read Isabella's post I was thinking of a Sloe Gin Fizz - a drink I used to get when I was 18 that made us feel so grown up. I wonder if that's what it was made of? Have fun with Cosmo!!
SoCalLisa - I'm ready to move there! Looks so beautiful!
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Oh Lisa, the pix are awesome!! Thank you so much for the eye candy. And CB, i am never polically correct. I think (know) you must be right about the "foob thing.' I am just trying to avoid lightening strikes from the ORC so working hard to tone down any offensive material and fear that BOOBS might be one of the things on the list. Then again, just guessing but does a great disservice to those who have gone thru such traumatic treatment as a mastectomy. I am just trying not to get into trouble, I suppose but what the hey? And yeah, I know my father would rather let his daughter die than part with one penny of his money. That is for REAL. MY cuz called stunned today after talking to my father (didn't know she had called) and she was in tears saying that she could not believe it and that my Dad had made it clear to her that i was on my own. So i am still searching very hard for a place to live on my budget. i am on several "income-based rent" places but the waiting lists are long. And now I am trying to decide, OK if i get BC back, where do I want to die. And I do not want to die here. I want to be back out west where the buffalo roam!! Morbid but I am truly thinking about this. ALL of my support still comes from Utah and the gals are having a big sobriety b-day for an old friend this Sat and everyone is going to call me-I mean the love for me is out there. I have already started to sort and pack a bit but i am picking up speed. SO, the first reunion may be off for the OBX as a place for us to gather. Too much negative energy!! And sloe gin, Oh my Lord, that was the first thing I got drunk on and I was so freaking sick. We students went on a boatride and I barfed everywhere. So Isabella, you be careful!! Enjoy but be careful!! And hey NoNi, yes i have had absolutely terrible pain in my legs-like it feels like my bones are breaking-I am not on any after chemo meds-and my onc says "so let me know if you have leg pain or headaches" UUUGH I just told you i am having terrible leg pain and he says, it's probably nothing-so that ended that conversation. I need to get to a place with better docs and more consistant care and support. And crikey, the thing about the sleeve when flying-ya mean ya have to get a sleeve to wear if you fly??? Noone told me that either. Just what i need is to have my arm explode in midair!! Oh this just SO bl#ws!!!! Love ya all, SV0
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Hi all
Have been reading so many posts. We have our new computer.My darling SiL set it up and it is all go.
We went and decided on our kitchen today then went for a drive out to one of the west coast beaches which are really rugged and wild. It was great wish I had taken the camera
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Found this image of the beach we went too, it is a black sand beach.Must go and have a bath as my back is really playing up and I am in a lot of pain but unfortunately having had polio as a child I get lots of problems.
Do hope everyone is having a graet weekendend.
Big hugs from down under.
Alyson
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Morning girls! I slept like a LOG!!! Not even a Tylenol PM! I went to bed at 7:30, & got up at 4:45, Ha! I was just mentally & physically zonked after taking care of Cosmo for those 9 days. I just went out & sprayed our whole perimeter.....House, fences, tomato plants, garages, & everything Cosmo boy became attached to! He IS just a boy, & has to mark his territory I guess, except that it's MINE!
You already knew that about your Dad Melissa.....It's just awful that other family members get dragged into it also! I honestly don't know how or why you still stay. It's like the two of you, are just mentally battling it out to see who will win. In your condition, the less stress you have, makes it easier for you. If you are going to stay, just shut it all out, ignore what is going on....and don't ask him for any help. You just get turned down...over & over again. I think when the girls are talking about a "sleeve", that is for lymphedema....right gals? And that is whey your arm painfully swells after surgery, and lymph nodes are involved. It can happen in your extremities, but expecially one of your arms after breast surgery. But the sleeve is like a compression sleeve I think, to help with the swelling. I was told to "massage, massage, massage" the whole area under my arm, to keep blood circulating. I know other women can tell a lot more about this, because I didn't get it. I don't know if it is more prevalent in women who have had a mastectomy....or not.
And my Dear, you should NEVER talk about dying like that....The whole thing IS morbid! What if we ALL get cancer back? We don't even need to think about it now. What if my Husband gets it, or my Daughters? We don't THINK about it now! What if I fall over in a dead faint in the street? ANYthing could happen....but we live each day as a new beginning! We don't need to "Plan" on anything happening! Except to maybe go shopping!
So if you really want to go to Utah, just DO it! Muster up all your finances, stuff, & pups, & just head out! Sounds like things can't get much worse for you anywhere else! I'm talking to you like you need help, like you are "reaching" out for answers.....And I just want to tell you, we ALL care about you....but don't just remember the "things" that "could" happen! You & I had a lumpectomy, & YOU had a lethal dose of chemo.....but now you don't know if you have cancer! NONE of us know if we have it or not! And if we do, we battle it, like we always do, & go on from there! It is not a death sentance! Maybe some of the treatments are close to it, but not the BC!
I read some of the gals posts on other threads, & those gals are fighting BC that has spread... And for the most part, they aren't even THINKING about giving up!
So now is it to early to go drink a "Slow screw?" Ha! I mean that's what I thought it was....just "slower" than the regular screwdriver! Man, I learn something every day!
Take care gals! xoxoxoxoxo
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Hello to All, I have not been on here for awhile due to the fact that the computer would not do much of anything, even let me go to Yahoo. I would click on and after watching that little circle that means it's connecting go around for what seemed like forever, I would get the message unable to connect to the internet. Bah, humbug. All of this happened after I was trying to book flights to Florida for a trip my girlfriends and I are going on in Nov to the one's timeshare near Ft Lauderdale. I had told my one friend who has no extra money I would take her on my companion ticket and she was thrilled so I went about booking only to find out the travel has to take place before Oct 31. So, I then told her I would give her some of my miles which is a real ripoff. I have been saving forever for a trip to Europe, but who knows it that will ever happen since I now don't even have a valid passport. Anyway, for 10,000 miles you get $100 off a ticket which hardly seemed fair since you have to spend a dollar to get one mile since they no longer give you double or triple miles the way they used to. I have done all sorts of things to get miles...gotten credit cards, eaten as places that give miles, booked trips before such and such a date, BUT when it comes right down to it, they are not giving you any deals. I just tend to get obsessed with things, trying to get deals which is why I have a lot of clothes with tags still on them. Here I am off the track again....well, I got two of our seats booked and the computer went down so the friend I had promised I would help out with the fare was the one I had not yet booked. My husband has a reconditioned computer in the basement that he is always bragging about the speed on so he said to use it....Well, it wouldn't work either and then I came to find out we didn't even have a dial tone on the phones. All our stuff is bundled so it's a wonder we had tv. I then went over to a friends to use her computer to finish all of this up so we would have seats together and I was unable to find my American Express card which is the one that gives me the delta miles and unless I used it to book a flight I was unable to use the miles toward the flight. So I had to use another card and for some reason it would not work and I ended up using my bank card which takes the money out right away and I need to pay car insurance so that wasn't something I had planned on doing. Now that my computer seems to be working I have to see if I can print these tickets. I cannot believe how dependent I have become on computers and cell phones when I resisted them for the longest time. Five us are going to Florida the lst week of Nov. Now that is positive thinking, don't you think. But I am sure I have said it before, I am they type who needs plans and something to look forward to. Now I need to use my companion ticket and was talking about a trip to MO to visit Uncle and cousins with my dad, but I am not sure if I should be taking any more time off of work since all of a sudden bills seem to be coming in that I had not expected. Like my car which I love needs a new antilock break system (I do have regular brakes and still drive the car everywhere, but I think I need the other for winter), for some reason the window on the passenger side will no longer go down, the muffler is welded on and one of these days it going to fall all and I still have not found my keys and it was the one with the keypad which is another modern convenience I have become addicted to. So if I am going to be investing about $3000 to get this car back in good shape, I am thinking Do I need a new car? Probably the next thing to go would be something big like the clutch or who knows what. My husband will say you need a new computer, Marybe, let's go get you a new computer But that is mainly because he uses mine a lot for some reason even if he does have the fast one in the basement and he doesn't use my car so he isn't saying Let's go get you a new car. Probably because he knows I would want another Mini and he isn't that wild about them. And I sure can't imagine taking on a car payment at this stage of the game. Heck, I like working and like my job, but who knows how long I will be able to keep this up.....some of the treatments affect my ability to do things and if I had stayed on Abraxane, I know I would not have been able to keep working.
I like the navelbine and they were not lying to me when they told me it was a gentle chemo, but in spite of the fact my cell search came back zero, I do not know if it is working or not because my CA 27/29 has gone up so much. I noted that there has been a lot of questions and posts regarding tumor markers. I have been having that test done off and on since 1998 when it was discovered that my cancer had come back to my sternum. At that time they were maybe in the l00s and rapidly rising since they went up from when I first saw the onco I am with today and he had them run and when I had the core biopsy of my sternum done a week later....think they had gone up about 30 more in a week. As of the last time we did the test which was about three weeks ago they were 632. The higest they have been was 659. Does this alarm me? Yes, but not as much as it used to since I know from experience they are not the only thing you you need to look at to get the true picture as to what is going on (someone already wrote about this) They are not always an indicator for everyone (this was also said) because I talk with all the others in the treatment room and there is one lady in there who gets clean scans and her tumor markers are up in the 1,000s....go figure that one out. And I also know a lot of oncologists don't even do them so don't get too upset with your onco, SV. They have always been a good indicator for me and quite accurate so I guess I should be worried, but I feel so much better than I did before I went on navelbine, that I am willing to listen to my onco ( I did doubt him that time and went to MDAnderson, but it turned out he knew more than they did) and not freak out and will wait until we do scans this fall to see if I need to freak out. Now the cell search had me worried since he doesn't often do that and I figured he must think something was going on, but it came back zero so that was great. I thank all of you for worrying with me and your kind thoughts and congratulations on that one. It is my understanding that the cell search shows if the cancer has left wherever it is and is traveling in your blood stream which would mean it could metastacize to somewhere new. So far even if I have had new mets in my sacrum and ribs and hip, it's at least stayed in the bones. It's also in my liver and sometimes shows up in my left lung, but it's been there since 98 also so as long as it doesn't pop up somewhere totally new, I can live with what I have. If the CA27/29 comes back under 30, they really don't even worry about it, unless they know you have cancer and then they would keep on checking it IF this is a test they do (cuz some just don't). The lowest mine ever got was when I was on aromasin and then they went all they way to 18. I myself think tamoxifen, arimidex, faslodex, aromasin, all those hormonal treatments are worth the aches and pains, weight gain and whatever SEs they may have, but that is just my opinion. They kept me in remission for a long time so any SEs I had were worth it, but of course that doesn't mean I didn't gripe about them at the time. I find with everything, that often we don't appreciate things at the time.....like my health, Boy, am I ever sorry I took that for granted.
There have been so many posts since I was on here last and I know I should be commenting on a lot of them, but I am afraid to go back and look at them all because sometimes when I click back to read something on these boards my post just disappears and that really makes me mad @#%*$&#^#@ mad. But I will comment on some things that I can recall......SV, I know you will make the right decision. My friend is having her double mastectomy on Tuesday....she will be in the hospital for two days. The way they do things today I am just thankful they are keeping her that long. She is having this because her cancer is lobular which means it is about 80% likely to occur in the other breast so she is having both taken care of now. Is the the type you have? You said your doctor said that having both breasts removed was the only way you could be guaranteed the cancer won't come back. Well, I hate to be a black cloud, but NOTHING guarantees it won't come back. I only had one breast removed and it was at the urging of my surgeon whom I really have great respect for and trush a lot......he said if it was his daughter he would have the mast as opposed to the lumpectomy so we would be sure to get it all. Well, this was 20 yrs ago and also I had no chemo or hormonal preventative after the surgery, but as we all know it did come back so obviously there was a cancer cell still floating around somewhere outside of my breast.......they didn't think so since the 19 nodes they removed were all negative, but it came back anyway. Sooooo, I don't think there are any guarantees with this disease. It never did go to my other breast, but if I had to do it all over again I think I would do both just to be even.....buying a bra is such a PIA and it never fails if I do find one that fits, they discontinue making it. Petty, petty, I know....should just be happy I am able to go shop for a bra and am not in a wheelchair and homebound. I always remember one time when I was griping about my legs which have always been where I carry my weight and my mother said Oh honey, Be happy you have legs. She was one to talk.....she found more faults with herself than anyone I have ever known and she was a beautiful talented woman,but never recognized her own worth. But still I always remember her saying that to me. I cannot imagine how awful it must be to have a Dad like you do. My father is just the sweetest man ever and would give me the shirt off his back if I needed it. GD, you are in my thoughts and prayers....keep us posted. Chevy, Am glad you had a good night's sleep....it makes the world seem like a better place, doesn't it. Alyson, tell us about the new kitchen.....I love kitchens! Let's see....I can't remember what was on the previous pages......oh sleeves....definitely wear one. I was fitted for one of those by some company called Jobst back in 1990 and still use it when I fly or my arm acts up or I do things that would irritate things like painting or digging in the yard, heavy lifting. I was scared what would happen after I fell cuz I gave my arm quite a jolt and landed on that hand so I dug out my sleeve. I did note swelling in my fingers and my watch band and rings got tight, but now everything is back to normal. I swear my friend has all they signs of lympedema, but they are telling her it's from her port.....she has not had nodes removed yet so that is the only reason I think they might be right, but it looks like lymphadema.........he arm is twice the size of the other one, she's got some broken blood vessels and she said it hurts. And they aren't doing anything for this because they are saying when she gets the port out, everything will go back to normal....she had a blood clot in that arm and that again they are blaming on her port and she is still taking coumadin, but has now gone to arixtra shots because of her upcoming surgery....I was talking to her yesterday about sleeves. I find it amazing the things oncologists don't tell their patients. After I was at her house using her computer yesterday I came home wanting to cry because I was thinking how this is just the beginning for her and she is just so happy she is through chemo and the surgery is coming up and thinks she will be through the worst of it. Well, believe me I pray she is. She's going to Florida with us even though she will be in the middle of the expansion....as I recall that was a PIA also..going for fill ups, bumping into things with my big boob cuz i couldn't feel it. I guess I think this whole deal is a PIA when you come right down to it.
Re our reunion.....we need to keep this idea alive even if it's not definite or we know where.
You've got a lot on your plate right now SV, but don't give up on life. You of all people are so full of life and have helped us all by making us laugh and sharing your adventures with us.
Isabella......you are doing so well and I am so proud of you for taking steps to make your life better. Any news on surgery plans yet?
I am getting off this effexor......don't really think it helped at all, but maybe it did change something. I have not been flying off the handle as often with Tim....he still is an annoying as annoying can be, but I just block him out most of the time. Did I tell you his new pastime?...working the Rubitz Rubic's? whatever cube. I think that was what messed up my comptuer .....him downloading pages and pages of instructions on how to solve the puzzle....so he sits around doing this all the time now. I think surely he can find something better to do with his life, but he doesn't. I think he is just lazy. If he takes the dogs for a walk he tells me like it is a huge accomplishment and he should be patted on the back for it. It doesn't matter, his dog will still crap in the living room and that really burns me up because he doesn't believe in disciplining the dog. But I no longer yell about it, I just move it to a place where I am pretty sure he will step in it and then when I come home, it's always cleaned up. I sort of think this med just makes me not care about things and it's causing me to put off things that need to be done.....like paying bills. I always have a ton of credit card debt and am switching here and there to 0% interest cards and do a lot of 6 or 12 months same as cash.....buy my glasses and my Dad's appliances that way. Anyway, I put these bills to the side and think oh, I have three weeks to pay that and then a week goes by and then two and the next thing I know I get a notice telling me I have been charged some astronomical late fee!! And this is happening more and more to me. Also, I cannot remember anything and am constantly losing things.....like my keys and credit cards....all of which usually turn up except for my keys. But this drives me nuts and I don't know if it is chemo brain or what.....but instead of dealing with this, I have been going to bed and reading. Sookie Stackhouse is now my best friend and I am on volume 9 Gotta go because this is so long I think I have messed up the computer again. Love to all.....Marybe
Diagnosis: 4/1998, IDC, Stage IV, 0/19 nodes, mets, ER+/PR+, HER2-0 -
PS Oh, I forgot about shingles ....I am so sorry for those of you who have or have had those. I got the vaccine for them even if I did have chicken pox because that is one thing I do not want to have ever. My ins would not pay for it because I wasn't 60 yet (that is about as stupid as saying women should wait until they are 40 to have mammograms), but I decided it was a worthwhile expense. My friend Kris gets those whenever she gets stressed out and I guess they are just horrible....she has to take vicodin for pain and an antiflamitory, but really she doesn't get rid of them until they have run their course. I have talked to others who have had them and they say that they are the most painful thing they have even had to deal with. Now I have another friend who had just a mild outbreak and all she did was itch like crazy, but maybe she didn't really have shingels since I have always heard they are very painful. So my sympathy goes out to you on those.
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