Between the Devil ( the red one) and the deep blue sea
Comments
-
Oh but that smartphone is sooo much fun! and ever so useful too. I took mine with on a trip, turned off data roaming and made no phone calls or texts because it costs too much and still had fun. It has games, an alarm clock, a flashlight, books, a camera and photos of special people. Still, I totally agree that it is impolite to be talking on it in restaurants or with other people. One time my sister and I were each on our phones, each calling one of our brothers at a (nearly empty) restaurant and apologized to the restaurant guy. Our excuse was that we needed to let our brothers know what was going on with our elderly father in hospital. In situations like that, it might be OK, but for trivia texts and calls, not so much.
ETA - our Dad has a smart phone now too and at almost 97 uses it for his primary phone, his e-mail and Facebook.
0 -
Pink eye is responding to the sulfa drops....Now if I could just find something to work on these funky nails. The odor has started (dogs keep trying to get to my hands), and the nails are lifting so I know the oozing is not far off. I do not think this is actually part of Adriamycin SEs, but then again when have I even had normal SEs with any of my treatments. My theory is that I gave the pink eye to myself from rubbing my eyes, but will see what the onco thinks tomorrow. Also will see if he feels I am up to the knee surgery the orthopedic doc is recommending. Oh and Heidi, the digestion stuff is better....am taking nexium and reglan still and have to watch what I eat in order not to set the hiatal hernia or diverticulitis off....so far so good.
0 -
Marybe, You are a mess! I can just see the dogs trying to get at your hands.Sometimes you just gotta laugh!! Glad the pink eye is getting better. Hope your onc feels the knee surgery is doable. Have a great day!
0 -
I saw the PA today and she says to me, Well, I see you are going to be having your scans and you are going to be going off the Adriamycin and I asked What do you mean going off of it? and she said well There is a maximum lifetime limit and you have how had what equals 6 cycles and that is all they recommend. I looked it up and it says you are not to have any more than 550 (ml?...I forget what the measurement was)....all because of the heart damage it can cause down the road. Frankly, I am thinking So what.....there may not be any down the road at all if I have to go off this one that was actually working. Or so we think....will know for certain what is going on once we get the results form the scans I am having this coming Friday.
Treatment was behind today as usual, but it did not matter a whole lot since I was not working. I left after the did my INR and I saw the PA and told them I would come back for treatment later since I HAD to go to my eye appt. I was just there last week and he plucked eyelashes then, but my eyes have really been bothering me...itching, feeling like I have sand in them and when I would look to the side the left eye was really bothering me....both were tearing like mad. Yesterday I had the asst and my boss look at it with the operatory light on and he was able to pull this long hair, longer than an eyelash, could have been an eyebrow or a hair from my head, out from under my eyelid....it was just lying there loose, but trapped under my lid and boy was it hurting....just had tears streaming down my cheeks from that eye. It felt much better after they got the hair off my eyeball, but it was still bothering me and I knew something was going on with both eye so it was back to the ophthalmologist again in less than a week. And he did remove more lashes and he said I have scratched the cornea quite a bit on the left eye, not a good thing. So I really have to contemplate that eye surgery I did not want because not only would I have to go off my warfarin, I would have to stop chemo. However, now I find out I am going to have to stop chemo anyway, at least this one.
Don't ask me where I was the day he told me this if he ever did. I was just under the assumption that we would do it for as long as it worked, was planning things around my treatment as far off as June. Anyway, I am bummed. They did tumor markers today, but if I can stand it, I am going to wait and find out what they are on Monday since I won't be able to get any scan results until then anyway. The only good thing I found out is that the drug co that manufactures Xgeva will pay for whatever the ins doesn't pay. I filled out the paper work and they said that was all I had to do.
I am trying to think positive, but it isn't always easy. Who would have ever thought that the chemo I was actually afraid of doing would turn out to be my friend and I actually feel like begging the onco to let me stay on it. Of course, there is always the possibility the scans will not show shrinkage, but with the way the numbers were going down I would think there has to be some visible improvement. And I just worry that there isn't that much out there for me to move on to....used the hormonals up and did what? something like 8 chemos that did NOT work. Crap, I may have to go back to something in the taxol family and just hope it isn't as hard as Abraxane was on me. Here I go jumping the gun......am sure my imagination will be running wild tonight.
My thumbnail is now totally gone and I am using salt water soaks and antibiotic cream on it per the podiatrist's instruction. The other thumbnail is raising up and about four fingernails are discolored. I did see nail changes in the SEs.....also conjunctivitis so maybe that is why I got pink eye.
I will post after I get my scan results.
It was in the 80's here today.....downright hot!! Way too hot for March.
0 -
Leave it to YOU, Marybe, to be asking for MORE Adriamycin! You are just the 180 degree opposite of the typical text book case, aren't you? Well, the "A" did a good job for you and I am going to go out on a limb and say that after Friday, maybe your markers will even be down to triple digits. Wow! That would be incredible and I will be in suspense waiting to see what they are.
I wonder if your dogs could give you the lick-cure on your nails? (Maybe not a good idea if your WBC is low.) All I know is that my hub considered our dog to be an athlete's foot specialist, better than the powders and cremes.
0 -
Hey Marybe, thanks for the update. That's a bummer about not being able to stay on the A Train since it's working. I sure hope they find something else for you to try, and that the SE's aren't too bad. Ouch for the fingernails! My dad swore by the salt water cure for cuts and bruises but, being from NJ, he meant the ocean. 'Course the Jersey shore was a lot cleaner 75 years ago.
Sending love and ((hugs)) and continued prayers.
0 -
These are just random thoughts (as I have no idea what I am taking about), but if A is still working well, could you sign some sort of waver to the effect of, 'I understand the possibility of and don't care about down the road heart damage and will not sue anybody if it happens etc.'....and then be able to stay on it? and/or is there some sort of clinical trial where people are taking more doses that you could get hooked up with?
I hope you have a distracting weekend planned, dear Marybe. Sending hugs and prayers from me too.
0 -
Marybe: You are one brave lady! Prayers that those scans come back good!
0 -
mARYBE; Thinking and praying for youl.. it gets a little 'scary' when we start running out of options. I'm riding the boat with you. but, we keep on keepin on.... smiling and enjoyuing what we have!! You inspire me...
0 -
Ah, Marybe,
Let us know what you get worked out. Glad you got that big hair out of your eye. It makes my eyes itch and tear just thinking of it. Hope you can have some distracting fun over the weekend. 80 degrees sounds wonderful. It's warming up here in CO and I absolutely am enjoying working in the yard, fertilizing the perennials, etc. Just soaking it up. Hope you can do the same. I'm planning on making Mojitos this weekend and pretending it's summertime.
Lane
0 -
We've had great weather here too! My sister in Portland, Oregon has snow!!! It's usually the other way around. Boy, is she pissed!!
I rememeber when my Dad with lung cancer was told he'd had enough of one treatment. I said, describe enough? Until that treatment kills him, why can't he just keep doing it?
0 -
It snowed here last night too. Pretty but I want to put up my window boxes. SOme people say we only have onemonth of summer here, I am startiung to believe them.
Marybe, I hope and pray your numbers are going in the right direction.
Because there is a special circumstance for you and others I don't see why Arithromycin can't be given to you on a compassionate basis. Has anyone heard of this with this drug. I can't see the argument against it unless the heart damage is immediate.
Love you
Ginger
0 -
Ginger, I often joke about wanting to have summer come on a weekend!
0 -
Well, I myself think HE should have been telling me and not the PA, but guess that is a mute issue. I am wondering if I can't sign some sort of a waiver saying I know there is risk involved. They said it can take up to 6 years for the damage to show up. I am not worried about 6 years from now.....I am worried about THIS year. I knew there was a lifetime amount you could get of this drug, just thought it was a long way off since I was getting the lower dose. Oh well, I suppose there is always the possibility the scans could show no changes, but I really can't imagine them not being better since the numbers were going down so much. One thing for sure, life is not boring. But on this score, I would welcome a bit less excitement.
I was wrong on the temp yesterday, it was actually up to 90o. Unheard of in March. I always thought Al Gore was an Ahole, but think he may have been on the right track about Global Warming. I am already worrying about what July and August will be like....and my poor back yard shade garden after losing that big tree last year and I am afraid maybe the one next to it.
It's times like this I am glad I have ADD.....doesn't take me too long to jump from worrying about cancer to my shade plants.
Guess what Chabba, They are saying rain for the weekend....figures.
Must go and beat a few barking dogs in the other room. The old kick the dog syndrome.....have a big fat big or me ever harming them at all, but do think I need to check out bark collars.
Later...will let you know when I find out something. .
0 -
I felt really mean using bark collars on my dogs. I was wrong. They train themselves with them. Stewie my 10 mo old standard poodle figured it out immediately and stopped the incessant barking to get my other dog to p-lay with him. He would sit right in fornt of the other dog and bark and bark and bark! After a while tiny Harry would throw himself at Stewie, going for his throat making a horrible viscious sound. Stewies hair is so thick that Harry could never reach his target. Harry also only has about 2/3 of his teeth left. Anyhow the bark collar made life so much more peaceful around here. I had it on low and Stewie did the rest himself. We also bought Kongs about the same time, put peanut butter in them or other treats and keeps them busy.
Good luck with your pooches.
0 -
Marybe, I really hope you can figure out a way to stay on the Adriamycin .... A waiver sounds like a good plan. Hope your scan gives you good results. Always thinking about you and keeping you in my prayers.
0 -
I was told last year that I probably have ADD. I wonder if that's what makes me so creative? I get bored if something I'm making doesn't work so I immediately move on to changing it, rather than re-doing it. Hmmmm......we have rain today! hehehehehe
0 -
I hope this chemo works for you Marybe, but he believes this is the only chemo left that gives a 20 to 30 percent chance. Wow don't understand it, doctors have been giving chemo for years and years and clinical trials and with my situation, my chemo quit working too. My tumor marker went up to 176 from 94 the ca15-3 and getting pet scan on Tuesday, feel good and I know before the tumors in my liver grew too. I too would like to get them cut out. Hey, don't know if you read my threads but CTCA does chemo right into the liver that might be my next step. Take Care and keep me posted.
0 -
Well, I picked up my scans yesterday and must admit, I was very disappointed. I was not expecting a miracle, but was hoping to see that the tumors had at least decreased in size or number a little, but no such luck. The reports said no significant change when compared to the last scans, which It think it said were Oct. I know the last thing I had done was a MRI and that was in Nov. or early Dec. and that was ordered by my bone dr....that was the one that caused me to call up the onco and say I am ready, start me on the Adriamycin......read tumors too mutiple to count in liver and that sent me into a dither. The CAT scan this time talked about the largest of the tumors being 8.5 X 7.5 cm. I am giong to have to dig out my last scan and see what it said....I was thinking maybe it was 8.9 before. So having gotten then news, I thought what the heck, I will find out what my tumor markers are and was expecting them to be up, but they were 2,373...that is down from 3.117. So I don't know what is going on. Maybe those tumor markers aren't as accurate as I always thought they were. I know I should be happy things did not get worse or larger, but still I am disappointed. I see the onco Wed. and will see what he thinks and what the new game plan will be if I have indeed used up my quota of Adriamycin.
0 -
Ah, geez, Marybe, I'm disappointed too. It's positive that the TM's are down, and no significant changes to the tumors means no growth. But still ... I hope your onc has another trick up his sleeve, or can be persuaded to let you stay on the A. Praying mightily for you! ((hugs))
0 -
Marybe: So sorry to hear that news. When you see your onc, ask him what can be done to keep you stable..even if a low dose of the same chemo you are currently taking. A small risk is worth taking to keep you where you are now. Have you asked him about taking Metformin? This has been helpful to many women with advanced cancer and it is in clinical trials now for non diabetic women with bc. Many doctors are giving it to their patients...there is a forum on here that explains the benefits, and there are few SE's when compared to chemo.
Praying and sending you positive energy!
0 -
Marybe - sorry that the news wasn't what you had hoped for. Sending prayers, warm thoughts and hugs your way.
0 -
Drats, but going down a little is better than going up.
0 -
Well, crap! Glad the tumor markers are down but we were all hoping for better news on the tumors. Still, sounds like there's been no progression so that's a little good news. We just wanted a lot of good news. Get your questions ready for your oncologist on Wednesday!
0 -
Marybe,
I really HATE to hear this. Let us know what the onc says. If there's no progression it's still good news. But, how frustrating.
Lane
0 -
Marybe, I'm not a scientist, but I've been thinking about your situation. Do you think it's possible that lower tumor markers might mean that the cancer, though not shrinking in volume, is less aggressive?
Something to ask your onc for sure.
Leah
0 -
Marybe... I was also thinking, like Leah, that maybe because your tumor is less aggressive, it takes longer to see results because chemo is generally better at attacking more aggressive tumors. Good luck with your appointment on Wednesday. I hope you get a good explanation and better news.
0 -
how did i know id find this here?? i haven't heard from you, and now know that means your'e digesting info...
im hoping, and thinking that Leah, and voracious are correct..
if they are slightly smaller, and the tms are down, they "tamed" it a little with the adrymycin.. to add to questions.. ask if you can try cytoxin, and if it'sd work.. i took it with adrymycin.. but it has se's too...
im praying dr. cody has a plan this coming week. i love you, my friend.. keep on keeping on.. we NEED you here....3jays
0 -
Marybe ~ I don't have anything to add that is any different than what the other gals have already expressed.
Keeping positive thoughts headed your way!
HUGS!
0 -
Today I got good news, really good news!! I get to stay on the Adriamycin and will stay on it until I have problems with it (heart....will monitor with a muga every three months....they will access my port at onco's office before I go for test so I don't have the problems I had last time) or it is shows in scans it is no longer keeping things under control. The person who interpreted the scans said unchanged, but Dr.Cody used stable....he said it didn't change, didn't increase,said it's stable, we like that. I like the word stable, always have.
I asked why the numbers show improvement and the scans did not and he said if I recall many times the numbers went up and we didn't see any change in the scans until later....he said it takes time and in the meantime, things are stable.
He asked me where I got that idea when I said Now, I know I am supposed to quit this chemo after one or two more treatments according to my count (that would make 16) and he asked where I got that idea? Why would we quit? and I said because the PA told me she saw where I would be finishing up the Adriamycin and that I was getting scans. I told him I found this very upsetting because as crazy as it sounds I LIKE Adriamycin and want to stay on it since the SEs are not bad and I was even going to sign a waiver saying I did not care if it does heart damage. He said Well, they do care if it causes heart damage and that is why they monitor it and so far it has been perfect every time they check and I will go again in April. He said since I get a minimal dose, there is much less risk of heart damage and that is why I can take it much longer....he gave me some formula which I think is based on body mass or something , but did not ask him to explain it.
I said to him. I worry. I worry all the time. I stay busy and keep on doing things, but believe me I worry even if I don't show it. Said I was surprised I don't have a bleeding peptic ulcer or something and for a few weeks I had this big canker sore in my mouth behind my lower 2nd molar and it was taking so long to heal up, I about had myself convinced it was going to turn out to be osteonecrosis. And then when I found out I was going to have to stop the Adriamycin, well, it was a bad week and I was really upset about it and had my friends on the BC message boards upset also. To which he rolled his eyes since he is not crazy about message boards. Anyway, to make a long story short I got my treatment, shared my good news with all the nurses and four of my friends who were there for treatment today and they got me in and out in time to go to work....the trick is just run the pre-meds fast. Oh and when I left the exam room I stuck my hand out to shake his, and he shook it, but he also gave me a hug and was patting me on the shoulder as he walked me to the door of the treatment room. My rather stiff unemotional onco, gave me a hug. I was quit flattered.
So that's my story and I am sticking with it. I have to go pack now since I am leaving for Williamsburg tomorrow after work....going by way of my Dad's, spending the night there....then early Sat.AM my friend Kathy will drive us to her condo in Williamsburg. She pays the fees every year so basically it is a free trip, but I will of course pay part of the gas and also help buy food. And I am going to have a margarita to celebrate....maybe more than one night. It's the one drink I sitll think tastes good post chemo and my INR was low 1.9 so I am going to see if I can raise it a bit.
Today when patients asked how I was doing, I said Good and I really meant it....or should that have been well? I forget even though I asked English Major all about this once. It's just a routine response you know, but it's true!! I can say it and it's true. As you can tell, I am happy and very relieved. I find it amazing how these scan reports can make or break a person and how reassurance from your onco can make you feel so much better and put your mind at ease.
Just wanted to share my good news with you. Thank you for all your thoughts, prayers and suggestions. It's nice to know you are always in my corner. Sleep tight, all. Love, Marybe
0
