For Older People with Sense

Oh, thank you so much for all those hugs and prayers.   He says I should not worry about the place in my skull....he said it is bone, not brain and since the bone mets are unchanged and under control there is no reason to think this isn't either....I said, but they never mentioned it before and he said that is true, but in looking back I guess the last scan of my head was in 2008 when I had those TIAs so who knows when this showed up.  I asked about those ischemic things and he said it shows narrowing of the blood vessels and I asked Does that mean I have Alzheimer's and he said no, he would imagine most people my age have the exact same changes....so chalk another one up to age.   Now the liver....he's a lot more concerned about it and said we need to go after the mets with something that is going to knock them back so of course that is chemo and the one he would like to put me on is Halaven.....he said they have been having excellent results with it.  Anyone know that one?....it is also says the generic name is eribulin.  You get it once a week for two weeks, then you have a week off an it goes like that in three week cycles.   The main SEs are hair loss, weakness or tiredness, nausea and constipation....I went CONSTIPATION!  I have been constipated for 8 months now.  He told me neuropathy is not a SE but on the paper he gave me it says it can cause it in the hands and feet and to report it immediately,also report fever, chills and all that other stuff they always warn you about. He said I would get a nuelastin shot each time since it normally knocks the white count way down.  And he wants to start next Wed.....I said Great, I am getting my hair cut on Tues....guess it will be my last for awhile, but I hope I still have hair on the 7th since I am going to a wedding.  Then back in the treatment room because I did still get my xgeva shot today the women are saying oh, you can get a cute wig and I said I had a cute wig and I want no more wigs and this time it is going to be strictly scarves and bandanas......I HATED wearing a wig.  Actually when I stop to think about it, I have hated a lot of things....Abraxane, Avastin, lots of things. He told me that this is going to be a new ballgame....that I am used to getting my treatment and then going off to work or wherever and have not really been affected to much by cancer, but he thinks this treatment is going to make an impact on my lifestyle and he thinks it would be a good time to check out disability and that I would have no problem getting it and they could help with the paperwork and I said I know that I checked it out two years ago, but I like to work.....and that was when I cried.  It is not making the money that matters (although it is nice), it's the fact I am doing a normal thing.  I was thinking today when I was seeing patients and they were asking how are you and I would say Oh, I am just fine and I was joking with them about things, when I am at work, It is almost like I have a role in a play or something....I am not thinking about cancer at all.  It isn't denial, but I am just not thinking about cancer and I really like working with people and just can't imagine being so tired I could not go in to work.  He's right, I have been very fortunate. But you know he could be wrong....I worked when I was on Abraxane and Avastin and I didn't exactly feel great so maybe I can still do it.  However both bosses are being very understanding...the one said he felt like he had been kicked in the stomach when I told him.  Dr Cody said something using the word battle and I said I hate that word, hate the way they talk about the fight or the battle and he said well, actually chemo is the battle part and that the cancer is me....Does that make sense or did I say it wrong.  I asked him if he now thinks my tumor markers are more accurate than he was thinking before and he says well, he never likes to see them go up, but you can't determine is a treatment is working just on them alone.  I got another hug today so I don't think he's a cold fish, just always acts like the professional he is.  As usual I forgot to ask things and I am not entirely sure I want to do this particular treatment since the onco at MDA thinks I should try xeloda so I called as soon as I got out of there and set up an appt just for a cons to talk to him again tomorrow and am taking Tim with me....this will be a first.  He asked me today Is your husband aware of what is going on with you? and I said Oh, he's not aware of much, but he does know I have cancer if that's what you mean, but he other day he didn't even remember I had a bone scan.  Tim wanted to know if I was going to be on this long term so I told him to ask him that tomorrow.  I am once again taking a list....did today, but didn't have everything on it.  Oh, and I told him No matter what, I have to go to MO the end of Sept, I HAVE to do that because I have a lot of friends coming to visit at my Uncle Bill's....he said that is a long way off and we can work around it.  Jeeze, I hope this treatment doesn't make me totally pooped if I do it.  I know I am going to do something, have to do something, but I am not sure if I am going to do this one since he did say there were several options.  Does anyone know Halaven or someone who has done it?  My mother lost her hair twice so I can do it also.....but I hope it doesn' t mean my eyelashes again also, but I know it does.  If I have problems with how they grow now, how will they be after a 2nd loss......but there could be the possibility my hair won't ever come back....he said he is not discounting that as a possibility.  I am starting to ramble....just wanted to tell you what the onco had to say.  It is so strange because I look so healthy and feel good. 

  Oh you know I am having my left cataract done this Friday and the Rt is scheduled for next Friday....I myself am thinking it might be smart to start the chemo after they are both done especially if I would get nausea from the chemo since you aren't supposed to bend over and if am puking, I would  hate to pop out a lens or something....just a cheery little thought that popped into my head.  Oh and guess how they help combat nausea....STEROIDS!....I screamed it out just like that and added an OH NO!! 

Marybe, it was good news about your head (know you'd been worried about Alzheimer's) but I'm so sorry for the news about the liver.  Good that you got a consultation at MDA scheduled already.  I've heard of what AmyJo was talking about and maybe you can ask the dr. there about it.  The success I've read about is very promising.  You're in my thoughts and prayers, and a lot of other people's too.

{{{{{{Hugs}}}}}},

Kathy

Hi everyone,

3Jay...I havent had reflexes since I was 19 yrs old (52 now). Even before breast cancer they did a variety of tests and never did figure out why. After breast cancer they decided they were gonna look into it again but all the specialists etc have yet to diagnose it. It doesnt bother me at all. I am keeping you in my prayers.

Marybe..You are in my prayers and I so hope everything is okay.

Hi Judylynn..Hi and I hope you will like it here.

Amy..I once knew a girl who had radon seeds placed in her nose.  I dont recall why but this was in 1965. I wonder if its the same thing as you are talking about for liver mets.

Tomorrow night my grandsons and I are going to decorate Easter eggs. We are having Easter dinner on saturday instead of sunday because one of the boys has to go to his Mom's house on sunday. The boys were worried that the bunny wouldnt have anything here for them a day early so I told them that I called the Easter Bunny for an early delivery and they were relieved. LOL.

Hope you all have a great day tomorrow..HUgs, Mazy

Hi

Marybe,

I read your post. Hugs to you.

Cyborg ~ I'll be with you as well tomorrow. ♥

Marybe ~ Sending love & hugs. ♥♥

Gingerbrew:

Awesome bright hair!

Cyborg...You have every right to be scared. But remember that many of us will be there in spirit. I hope they find nothng bad at all.

Ginger luv the hair..Hugs, Mazy

{{{MARYBE}}} So glad you don't have Alzheimers but sorry yoiu have CRS. I am praying for you that you find the right tx. I am so glad you are having the consult with the MDA onc. Please let us know how the meeting goes.

(((CYBORG)))) holding your cyber hand. Scary stuff. I hate doctors. Prayers going up for you.

Chabba, thanks for the feedback on the website. It's not my sisters material, she is just the web designer. Has anyone else had a chance to check it out? It's www.theseventhwoman.org

Marybe, mixed emotions......I don't know what to say! You tell it like it is, so we understand what's going on and all, but I just don't have experience with the drugs. Halaven and the e-one do have thier own threads, though, as those names are familiar. Hugs to you sweetie!

(((Marybe))))

It is easy to understand your desire to try to keep your life as normal as possible. No, it's not denial, it's just not wanting to be a cancer patient 100% of the time. Any chance your drs could let you work the desk, even on a part time basis? Even if you did it as a "volunteer" if you actually went on disability, I think it would be a positive thing in your life. We all need a reason to get up, dress up, and keep moving. Or - is this the time to get it in high gear to finish all the work on your dad's house? Now that could be a full time job! I've never understood... how far from where you live is it to your dad's? If you move there can you still have your same drs and same circle of friends? That would be important.

You sound so strong in spite of a big mountain to climb. If anyone can do it, YOU CAN!

Marybe- Gosh I'm so sorry - what a tremendous amount of just thinking and planing you are dealing with right now. I'm glad everything with your brain is alright and it sounds like this doctor has a good handle on everything but always wise to get another opinion! I know you are not happy with the upcoming treatments and such but your attitude sounds very good and thank goodness you have understanding bosses - you are right they don't totally know how this will affect you as everyone is so different but sounds like you are thinking very clearly and getting everything into place. I'm so so sorry you have to deal with all this and again the hair loss! I hope you get your questions answered.  ((( Hugs)))

3jays - really no reflexes??? My reflexes are so over the top I have to worry if I accedently hit the top of my knee I'll kick someone and hard. Or when driving don't want to hit the acceleorator. when my neuro does the reflex test he moves clear out of the way. I thought that was part of MS. But I guess everyone is different...

Isabella - sounds like the wedding will be the event of the year!  Hope you have lots of fun and stay out of the fist fights.   So sorry to hear about your little Yorkie.  Hope she does not suffer any as I know that will be really hard on you.  The mental picture of you and your pet cows makes me laugh!   You are a precious lady.