MIDDLE-AGED WOMEN 40-60ish

barsco1963

DS made it home safe n sound. What a thrill to have him here again and I  think he is quite happy to be on familiar stomin grounds also. He and his girlfriend have been inseparable since his arrival.

hns - It is wonderful to see them mature but is incredibly hard to let them spread their wings sometimes. Especially when they use those wings to fly so far away from home.

luvmygoats

Barsco - I agree.  DD is only about an hour away but could be a million miles for how often we see her.  She did agree this weekend that I was not a hovering mom.  Usually have no idea what she does on weekends but she will tell me the rare times she goes out of town.  Did ask her to provide me with the address/cell # of her boss whom she cats sits for (at boss's house) frequently.  Now that it's daylight later don't worry so much.  She was looking at jobs in Seattle on the net last weekend when she was home.  Hope she likes rain if she finds something.  That's something that's becoming more rare in Texas.  Enjoy your week with your son.

Dianarose

Barbe- My PT order the gauntlets as well. Just 16 days to vacation, not like I am counting or anything. This will be my first real vacation. If I like flying then next yr I want to go to Europe.

Valjean

heart, Thank you for sharing your TM experience, that gives me hope. It has been an awful six month wait. And, having already had the upcoming Onc appointment changed from a Wed to a Friday, I was called this morning to be informed that my Onc (that I was scheduled to see this time) will only be in the office, starting this week, on Mondays & Wednesdays. So it was changed again & I will see the NP & at a different time to boot. That's okay, I much prefer her over the Onc.

barsco, I'm glad your son made it home safely. Enjoy your very special time together.

elimar86861

Hi All,  I've been invited to enjoy a heapin' helpin' of 6 more mos. of chemo.  That's 12, count 'em 12, luscious servings every other week.  I heard the first infusion day is, like, 6 hours long.  After the first hour, in which I will comtemplate life, the universe, and everything--including how much I loathe all things chemo--whatever will I do with the next 5 hours?   If I remember right, isn't this about when the chemo gals start chugin' the Benadryl?

Another story from the "gotta start paying myself dept.":  So, after spending over an hour at the MO's today, and I was all the way up to the front desk to set my chemo start date, when I remember to ask, "Hey, what about my port?  It got decomissioned about 2 mos ago, but it's going to be back in service soon...doesn't it need a flushing or something?"  Turned out the answer to that was yes, it did need one.  I'm pretty sure I would have gotten away without anyone giving it a thought so, once again, good thing I was supervising. 

I thank God (Goddess) and all providence that I am neither old, sickly or frail and have a sound enough mind (benefit of doubt, please!) and can still look out for myself.  You have no idea of how fearful I am when I can no longer do this.

Next up, getting a certain blood test that my MO said ins. would not pay for, and yet when I look online I see it is FDA-approved and see that UHC has a billing code for it.  Could he be (ahem!) possibly incorrect?  These are the times that try a cancer-woman's soul.  Just FYI, I am including a link to the website for this particular blood test, because it does have implications for Breast Cancer as well as my good old CRC.

Blood Test for Circulating Tumor Cells

The test says for Stage IV's, which they have not labeled me as yet, BUT anyone who is facing six mos. of chemo and who might have some CTC's could be interested in what this blood test can reveal.  I know I am.

raehyg

Hi everyone...thanks for the warm welcome! I lost this page somehow....getting used to navigating. I started my chemo on March 18th. Now I am feeling better but was wiped out as I was trying to work. My head feels like thumb tacs are hitting my scalp and I am itchy at the same time awaiting my hair loss. I am not too worried about that but the waiting is a drag. I put a scarf on my head so I won't scratch....getting prepared, lol.

raehyg

Elimar,

I am sorry you have another 6 mos...that stinks!You have to be your own advocate! My daughter is a cancer survivor  so I learned to take control then. If I remember correctly your port needs to be flushed once a month. Its sad when health care professionals aren't doing their job! Like you said its good you are vibrant and not elderly, etc. The elderly do not always have people to stand up for them.

maryah930

Jo ~ I didn't forget to take a pic of me as Ethel, but took a pick in the Lucy/Ethel headgear and an apron and another as a down-home Carmen Miranda, so I don't think i'll post those, but promise to post one soon, just a little more dressed.  But thank you, it felt really good to feel sexy and naughty for the first time in a very long time.

HUGS and so very grateful to you.

barsco1963

Eli - good to hear from you. Sucks big time that you will have another 6 mos of chemo. It better damn well do it's job for you! Being your own advocate certainly keeps you busy doesn't it? Thank goodness you are on top of everything.

I have heard of the CTC test. It sounds promising for predicting and understanding cancers progression.

Hope you are healing well from surgery and have lots of sunshine to enjoy. Thinking of you often. xo

marlegal

Miss Eli, good to see you sweetie. I hope your chemos result in the most minimal side effects possible. What to do for the six hours? Have you journaled yet? A good friend of mine gave me my first journal right after my dx. I found that writing in it during my chemos made them fly by. My hub came to one tx with me and we realized that didn't work for either of us! I really preferred to go it alone. Another way I passed the time was to look around and find someone who looked like maybe they needed an ear. I wasn't always in that good mood, but when I could, it helped to get someone else to smile id I could. Hugs buddy.

Valjean

E~~ I bet one of your first thoughts as you were seeing your MO today was, "Okay, chemosabi, let's get this show on the road!" Thanks for sharing the link for the CTC test. Very interesting to read about. I wonder if my FIL has that run for his prostate cancer. He probably doesn't know really, I imagine he doesn't ask, knowing him.

It still amazes me that we have to do the job of the caregiver as well as keep track of all prior treatments, billings, payments, etc. for our healthcare or take the chance of it not getting done, or properly, at least.  

I hope the time passes very quickly for you & the SE's are minor.

Think of you often.

barbe1958

I know I would read, elimar, as I do at any downtime and every night. Then I'd slip into a nap using earplugs to disallow anyone from interrupting me! The plugs are bright orange and quite obvious so you're not being rude....

Momine

Eli, thanks for the update, sucky as it is. I hear you on having to stay on top of the docs to make sure they don't screw up.

Meece

Elimar, the Benedryl was my best friend, but I also brought a quilting project, crossword puzzle books, and magazines. I also chatted with nurses when they were available.  As luck would have it, the daughter of a freind of mine had a cvouple chemos on the same day as I did, so we chatted some.  I liked sleeping best though.  NEver thought of the earplugs.  That's a great idea, Barbe.

elimar86861

After much more reading, yesterday and today, I have revised my opinion about that blood test that I linked to.  Although it does look a good way to do additional monitoring for Stage IV's (the progression/remission and success of their treatment,) I really don't know how it would apply to me.  All the data I see is in terms of how it applies to people with mets to organs so, if I had the test, what would it even mean to me??? 

I'll keep it in the back of my cluttered head and hope I will never have a need for it.

Speaking of blood tests...I will be followed with one test for a specific tumor marker (CEA, not for B/C) and I got results of being in normal range on that today.  As you all know, the tumor marker tests can be good indicators but sometimes they don't accurately portray what is going on.  Who knows?  I'll just take it as good news anyway.

Barbe,  I like your suggestion!  Have earplugs, will travel.  As I get into treatment more and the fatigue looms larger, I bet sleep will be a big part of treatment day and I may not just take earplugs, I make take a crazy looking sleep mask because those are a little dorky (right?) and something in me wants to be the non-conventional, attention getting patient of the chemo center anyway. hehehe

mumito

I would read a good trashy novel.In our chemo room we all had tv hook ups so I was weird.My daughter who always accompanied me would put on the food network for us to watch the cooking shows.I think Our chemo nurse thought we were nuts.Good luck with your treatments Elle.

Meece

In our chemo room there was one tv for about every 10 patients.  I never seems to be able to suggest what was on, so I just did my own thing.

I had started online dating and one of the nurses was also on the website, so we compared the guys!  That was an interesting way to pass the time.

luvmygoats

Eli - Taking a crazy stab here.  Have you glanced through the starting chemo thread to glean any new tricks/ideas?  You probably already know all the tricks but maybe not.  At least the front page of the thread.

The sleep mask would be good for hiding if you are not in the mood to talk.  I use earplugs all the time when we travel.  Can mask most anything.  Do practice putting them in esp. if using the compressible foam ones.  I always have trouble getting the left one in well.  Meece may be talking more fancy ones than DH and I use which are the cheap disposable.  Which I found out by accident are sold at the grocery store.  DH buys the bulk kind from sporting goods.

Light snacks, fav drink (non alcoholic sadly).  I only like one kind of ginger ale so that would be what I would take.

I know if I had chemo I would have a Kindle etc. to read on.  I'm a book reader and like the feel of book in hand but would def. buy E reader for my treat or I pad or whatever is the electronic du jour (can you tell we're not electronics junkies?).

Yes, 6 mo' months of the chemo train is sucky but want you around for a LONG TIME.  Love you.

heartnsoul76

How funny, Elimar!  I like the idea of being the attention-getting patient.  Why be boring - or bored?  It's not exactly a fun situation anyway so amuse yourself.  I think that's great news on the tumor markers!  I know they can't be definitive, but if they check them regularly you can feel pretty secure about it if the numbers are consistent.

Whenever I try to take something to read at the doctor's office, I'm obviously so distracted that I have to read it all over again at home.  So I quit doing that.  Now, I just play word games on my iPhone.  I'm waiting for my son to write my puzzle app I thought of for the iPhone.  But he's kind of busy with his senior year.  Terrible how things like school and work get in the way of life, dontcha know.

Dianarose

Eli- glad to hear from you. This thread is quiet when you aren't here.  Sorry about having to do the chemo again. Totally sucks. Will it be the same flavor as last time or a different one? The center I went to for chemo would call early in the morning and take a lunch order for my friend and I. We could have anything we wanted from a lobster roll to a salad. Having a friend go with you makes the time go by a lot quicker. We would do a little retail therapy either on the way or on the way home. I really miss her.  

Only 14 days to go until my vacation in NC. I can't wait to rock my granddaughter.

Meece

Wow, Diana, you got some service!  If I wanted to eat I had to bring it with me or send someone to get something.  I think bringing something to read would be a good idea if you could keep getting distracted it might make the day go by faster.

Eli~ since you won't have the little dictator, I am assuming they are going with a different chemo, correct?

elimar86861

D-rose, let's say that the B/C gals chemo is a gin martini, and I'll be getting a vodka martini.  It is called FOLFOX4.  Google it for a quick look-see.  I think the experience is qoing to be very similar to what most B/C treatments put you through.

luv, I continue to look thru' some of those chemo threads and I'm still learning the little tricks that the women share.  However, I will not be able to do anything ice-chip related.  One of my chemo martini ingredients is supposed to make me incredibly sensitive to cold.  (Good thing this is not Winter chemo, was my first thought.)

I still continue to lose weight, and it has been about 13 pounds since this all began.  O.K., I might have had three pounds to spare, but the extra ten...I'm now looking a little chicken-y in the legs.  I am worried that I could drop a lot more doing chemo all summer...to the point of malnutrition.  I have some absorption questions to ask my surgeon about, because I AM eating and not shying away from the calories by any means.

Middie-friends, when you do not see me on here, you have to realize I am Googling cancer, reading about cancer and aspects of my treatment; and the phone has been busy with nurse line follow-ups and friends calling (which means they want an update,) so I can easily get cancered-out most days.  Despite all the great support here, it is not where I need to head to when I take a break from the other cancer related stuff.  Sometimes it feels like "all cancer, all the time" and you can understand my need to back away when I can.  So, although I might not be having my cup of tea here with everyone each morning, I will be visiting from time to time.  After all, someone has to change the picture up there.

barsco1963

Best wishes to you Eli. If there was ever a time that I hoped that the summer would go by quickly, that time is now so that you can be done with chemo and on your way to healing and moving on. We look forward to your visits when you're up for it.

DH has been busy this week with maple syrup season in full swing. He and a couple of friends have a basic operation that they work together on every year. No lines to bring the sap to them - it's a walk through the bush to gather the sap (about 160 pails), and boil it down in an outdoor, home made boiler. It is definitely a lot of work but boy is it worth it. (easy for me to say, I have only been out once to help collect sap) The liquid gold is sooooo yummy. And good for you too! Maybe pancakes and fresh syrup for breakkie this weekend.

Loral

Quick question, I'm 51 years old, post-menopausal since 10/2011, I just read that Tamoxifen is for pre-menopausal women, I also read if I don't have hot flashes with Tamoxifen my recurrance rate of BC is higher...(I don't have hot flashes)  Should I just stop reading???

april485

Hi LorAll, I heard that from a few people (that if you don't have SE's from tamox then it is not working) but it has been debunked by some others. I have no idea what to believe. I haven't started tamoxifen (yet) and it will be prescribed for me. I have heard there is a blood test that tells docs if it will work for you (not sure what it is called) because for a small percentage, tamoxifen is not effective? Hope you get some answers from others who know more than I do soon.

Cindyl

LorAll - It isn't so much that Tamoxifen is for pre-menopausal women... It's that all the "other" drugs are for post-menopausal women.  If Tamoxifen works for you without major se's, it's an excellent choice for you.  There are SE's with all of these drugs, but one of the good ones with Tamoxifen is that it tends to strengthen bones rather than weeken them as many of the AI's do.  I think the no hot flashes means it isn't working is just an old wives tale.  And April is correct there is a blood test that you could request...

elimar86861

The Tamoxifen utilization test is called the CYP2D6 (liver enzyme) test.  Or, there is the "poor man's" version...Do you get sleepy when you drink Benadryl?  Well, you need CYP2D6 to metabolize that, so if you get sleepy with the Benadryl, you are probably o.k. on the Tamox. as well.

I also want to comment on the bone strengthening properties of Tamox.  I remember reading that it added a whopping 4% density to bones of postmenopausal women.  Then, when you stop Tamox., that extra density drops off fairly quickly.  Tamox. is still a lot more bone sparing than the AI's, and it is a good choice for any woman that falls into a high risk group for osteoporosis.

dechi

Saw this on the news this morning:

CD47

Cindyl

Thanks elimar!  Good information to have!

evjaq

I didn't get really fatigued. When I did feel tired I took a nap and it really helped. Vitamins B6 and B12 along with the multi-vitamin seemed to help too.

I didn't find radiation bad at all and I had the 33 treatments too. What became annoying was every day same time same place.

Hope all goes well!