Stage III Chemo questions

JFV

Thanks amlg!  I annoyed at my onco too!  Too much information!  Too much to worry about when I am feeling ill!  Hope this post finds you still feeling well!

mcsushi

hey gang!!!

heading out of town for the week but i wanted to drop in and see how everyone's doing??? joan: feeling any better? ice cream always helps!!! jackie: love the new photo!! looks like a great trip.

so i went to see my onco friday and she's moving me on to rads and with the possibility of maybe retrying taxol after rads. i'm ok with it for the most part; i'm just anxious to get back to some kind, any kind of treatment. all tolled, this will have been a 2 month set back i would like to just forget and move past. onward and upward!! for know, i'm going to live it up this week while the living's good. hope you all are well and sending you positive vibes a plenty...

JFV

mcsushi  You have been on my mind alot.  Glad you checked in.  I am sorry about your set back and glad you are gonna live it up!  Where are you going?  I am sure the rads will clean you up and then you'll be healthy enough for Taxol. 

I am Ok.  I wake up nauseas every morning since Taxol which is tough and I am still tired.  Otherwise plugging along and trying not to waste time worrying.

Have a great week.

Joan

grneyd5600

Good news mcsushi - the rads are critical so let's see how it goes and maybe after that they can try the Taxol on the longer cycle. 

Joan - sorry you are having nausea.  DId onc give you something for it this time?  I still have a compazine RX if I need it.  Luckily I haven't.

Had # 2 Taxol today.  Talked them into reducing the amount of Benadryl from 50 mg to 25.  I was able to stay awake during the TX.  I did crash when I got home for about  4 hours but feel good tonight.  Hope it continues.  I really the think the 12 weekly doses was the right one for me.  I seem to be handling it easier than some of you girls on the dose dense regime.  Hugs to all of you!!!!

JFV

Jackie  I'll see the onc on Friday and ask about nausea.  I have something, not compazine.  Also, I was taking a Xanax in the middle of the night and wondering if that added to the nausea.  I tried no xanxa last night and felt hungry this am only passing nausea.  My behind is dragging!  Saw on the other post your sister is visiting.  Enjoy her!  Glad you are feeling well1

gin2ca and mscushi  How are you both?

Latte

JFV - try to swap the Xanax for Ativan - Ativan has the added bonus of helping reduce nausea, as well as reducing anxiety, whereas Xanax just works on the anxiety.

grneyd5600

I have to tell you girls this weight gain thing is driving me insane!  I am gaining pounds a day.  It has to be from the steriods.  There isn't enough anxiety medicine in the world going to calm me down if I gain much more weight!  Ugh!!!!!! 

flopsy

Joan,  thanks for asking about me.  I am doing as well as can be expected I guess.  Feeling better right now becaue I have break between tx's.  Will see onc tomorrow for next schedule.  I am still having digestive issues and blood sugar elevation even though was not diabetic before tx's.  My blood pressure is really low most of the time and my pulse is elevated.  I think that is a really weird combination of SE's.  My main concern is lack of energy and have no stamina for doing anything without resting more than working.  This is frustrating because I have always been a busy lady but hoping that will change after tx has ended.

Jackie,  I have pu on a little weight since this began also but I think mine is because I have been very inactive because of some many SE's.  I do not eat as much as I did prior to DX but as far less active.  Hopefully, we can get this under control soon.

mcsushi,  Hope rads go well for you and they can get you back on track.

Gotta go get on exercise bike for a few minutes before I lose my steam.  Hope everyone has a wonderful, painfree, most excellent day. LOL,gin2ca

JFV

gin2ca-  Good to hear from you.  Sorry it has been so tough.  The BP pulse thing is a little weird.  I know my BP has gone up and down with this whole trip.  The doc and I blame it on stress and steroids.  Could it be the same for you.  Sorry about the blood sugar.  I'm sure that doesn't help your energy problem. 

Like you I am sick and tired of being sick and tired.  Just read on another thread from some ladies who have been there and done that, that we will be pleased by how we feel one month after treatment and amazed at how we feel 6 months later.  I am sure it will be the same for you.  I wonder too if there will be some lasting damage from chemo to my body.  Unfortunately, we won't know until it happens.  People keep asking me if I have found something to occupy my down time and I haven't.  Like you I rest alot.  Today I bathed the dog and ran errands with my daughter.  Haven't been that active in ages LOL!

Jackie and gin2ca- Haven't gained weight.  When I am super stressed I don't eat so that started me on my weight loss. My mouth has been uncomfortable most of the time so I am not interested in food.   I also may not get steroids as often as you do since I get Taxol every two weeks for a total of 4 doses.   My guess is the steroids are the big culprit for the two of you.

We are having lovely weather here.  Hope everyone else is also.

Joan

mcsushi

Hello ladies!! Got back last night (no internet at my grandmom's and my iphone won't let me post) so just checking in to see how everyone's doing??? Spent a few days down at the beach (LBI and Atlantic City). Enjoyed the fantastic weather, put a lot of salty sea air in my lungs and got way to much sun  Cancer patients shouldn't be this tan but oh well!! I had my CT scan on my lungs today, 1st appt with radiation onco tomorrow and then pulmonologist on Wed. If all goes well (please, please, please!!) I'll be back in treatment within the next week or so. I also made the decision to get a second opinion on chemo opitions. Waiting for a call back from the second opinion onco. Fill me in on how you all are doing!!

JFV

So good to hear from you!  I am so glad you had fun.  Did you see any shows in Atlantic City or win big?

I am OK.  Taxol makes me blah for about a week after.  My mouth continues to feel like it is burning.  I suppose I should get it looked at.  But, it is easier than AC.  The oncologist says my tumor markers are down which means the chemo is working and the spike in tumor markers was the residue from dead cancer cells.  I do not know if that changes my prognosis in her eyes or not.  But, I feel better about my prognosis. 

I am playing the mental worry game as I approach my third Taxol on Wednsday.  I will see a radiation oncologist on the 9th and want to set up a 2nd opinion at a facility closer to home. 

Does anyone know how to evaluate radiation oncologists?

mcsushi

joan: i didn't hit the jackpot this time  but i had a great time anyway. hope taxol #3 went well for you on wed... thinking about ya...

i had my rad consult and ct simulation this week and FINALLY have a green light for more treatment from the pulmonologist! i have second opinion appt with a med onco and rad onco on the 23rd @ upenn and should start rads the 24th or 27th. my onco also decided to retry taxol once i'm finished rads. we'll see what the second opinion onco says, but things are definitely looking up and i'm am just so happy to be able to restart treatment!!!!!

hope all of you are doing well and enjoy the holiday weekend!! 

JFV

So glad to hear from you mcsushi.  The restart is wonderful!  I am sooo glad you are healing. It will be great that you can restart Taxol. 

I am doing my rad consult on the 9th.  Any questions I should ask?

So far so good on my third Taxol.  My mouth hurts which is usual for me and my fingers and toes tingle.  I am tired but doing better than I thought.  The weekend is usually when I get worse.  My side effects are never major I'm just useless and cranky for a few days. 

flopsy

mcshushi, I am going next week for my 1st rad onc consult next Tuesday.  I will be glad to get this started also.  Good to hear you are doing better and getting started on some treatments.  Hope you all have a good weekend.  LOL,gin2ca

grneyd5600

Girls I am gaining weight (3 lbs) a week.  Ughhhh!!!  I do know I am not as active as I was before this but geez!  I must admit I am not making the wisest food choices either.  If it tastes good and I am hungry I eat it.  Oops! 

Other than nose bleeds and a bit of numbness in my fingers I am doing ok with SE's.  I still don't have a rad onc referral yet but hoping that the BS gives it to me in two weeks when I see him again for my 3 month check up.  I would like to know at least what to expect with that.  I have #4 Taxol on Thursday.  Keeping my fingers crossed!

I hope that everyone has a good week and I will keep you all in my prayers. 

clariceak

For all the chemo gals - it's wonderful to see you supporting each and making your way through treatment.  I started chemo in October last year and I truly believe that steroids was one of the worst parts about it.  I begged my onc to let me lower my dose and she agreed and I went off them during Taxol.

My youngest daughter has to take steroids for a mystery stomach ailment for six weeks.  It's awful to watch what it is doing to her.  She has gained an enormous amount of weight in the few weeks she has been on them, has the classic moon face, lost her sparkly personality and sometimes looks a zombie.   It's such a powerful medicine that see what  it does without the chemo added is shocking. Unfortunately, this is the only option for her.

flopsy

Went yesterday for rad onc consult.  He is planning 6 wks of regular rad tx with 4 extra skin directed doses at the end.  Today had a CT for dosimetry planning where the dosimetrist will figure out my planning doses.  Go back 9/20 for simulation and hopefully start rad tx a few days after that.  I am still having taste issues but it is better and my digestive tract is a lot better.   The Rad Onc did tell me that my esophagus may get clobbered again toward the end of that tx---JOY JOY!!!   There is that gift of cancer that just keeps on giving again.   Hope everyone is doing well.  I am thinking of you all.  LOL, gin2ca

mcsushi

oh steroids... the bain of my existence. i've been on prednisone since july for the inflammation in my lungs and it's been a thin slice of hell. i gained 20 lbs and had maybe one night's good sleep in the last month and a half. i started tapering back on the steroids last week but i still have 2 1/2 weeks to go. can't wait to be DONE!!! then, we can start a steroid-induced chub club!!

gin2ca: glad your appt with rad onc went well. i'll be having 5 1/2 weeks (28x) rads. i had simulation last week and next week i have one more planning appt to do port films and check that all the measurements are correct. looks like we'll be starting within a week or so of one another!

thinking of you all and hoping you're well!!! 

JFV

Hi ladies!  So good to hear from everyone. Saw a rad oncologist yesterday and liked her.  But the trip to the office is an hour long through heavy traffic.  Asked her if it is Ok if I go to the sister hospital 15 minutes away from home and she said yes.  Hopefully will make an appt for a simulation soon.  If I stay close to home for rads I may get back to work sooner.  Even though I know I will deal with fatigue I am going a little nuts at home now that I feel better. 

grneyday thinking of you and Taxol.

Sorry about everyone and the weight gain.  I still haven't gained but the minute my onc told me I should keep off the weight I lost my appetite came back with a vengence!  My mouth only enjoys fattening food right now.  I can't believe this weight battle starts again!

My SE's from Taxol 3 were the easiest yet.  I hope that last one doesn't make up for all the fun I've missed. I'll get my last on Sept 15.  Then my sister is coming to take care of me as my husband, kids and parents will be out of town.  I love her but have a lot of trouble letting people take care of me and don't know if I'll crack when she tellls me about her car accident from 5 years ago for the thousandth time.  Pray for me to be patient and kind!

Claire_in_Seattle

Joan.....

You just have to get walking.  This really works and will help with radiation fatigue.  It will also help you deal with your sister, especially if you can walk solo.  Just tell her that your doctor prescribed a one hour walk each day.  Then take it, rain or shine.

This will keep off the weight and rebuild your body.

As for your appetite, are you getting enough protein?  The recommendation was 80g per day.  This is a lot, but if you are eating only 30 or so, you will be not getting the nutrients you need.  If you get enough protein (and your body needs this to rebuild), your food cravings will be tamed.  Plus, you will have more energy for those hour long walks you will need to not land in the slammer from battery of sister when she opens her mouth.

So daily walks and up the protein.  If you do these, I think you can avoid the weight battle.

Then eat veggies and fruits.  I know this is boring, but I also know that we have two months of wonderful fresh fruits and veggies before the choice is limited.  A large hunk of steak and tomato-basil salad is not difficult to make.  Then fresh fruit.  You won't have that much room left.

Good luck!!!

I am sure your doctor will write you an "exercise prescription" if you explain the deal to her.  Look up the protein recommendations on the ACS site.  You body is healing.  Three months out from active treatment, I am still eating more than I normally would.  I just need it. - Claire

luckyduck

Hi...I am also new to this group.   I was diagnosed at 38 in Canada with a similar diagnosis.  I'm four years in and doing pretty well with some residual fatigue and joint issues.  My question is regarding your tamoxifen.  I though this was only prescribed if you were ER+ or PR+?  Did you Dr. mention why they wanted you to have this?

JFV

Dear Claire.  Thanks for the protein info.  It makes alot of sense.  I have been trying to focus on fiber.  Because I have the -shall we say-" chemo clog" and had been having eggs in the morning but switched to oatmeal.  Back to eggs it is!  It's a beautiful night I think I'll go for a stroll.

luckyduck- Always glad to hear from someone who has been around for awhile.  I am very ER positive (something like 80 to 95 percent)  I just got my Tamoxifen prescription today and will start it Oct 1st.  I think if you look around on these discussion boards you may find something written by  ladies who are er and pr negative.

JFV

LAST CHEMO TODAY!

Claire_in_Seattle

Big congrats Joan......  May the rest of your life begin!!!! - Claire

mcsushi

Joan:

 CONGRATS!!!!!!! You made it!!! 

JFV

Thanks mcsushi and claire.  Mcsushi love the picture of your dog.  How are you feeling and doing?

mcsushi

i'm doing well. went back to work this week!! yay!!! i have 2nd opinion appts with onc and rad onc next week, then treatment hopefully. it's been a long time waiting and i'm more than ready to get on with it. hope everyone is well and have a great weekend!!!

grneyd5600

JFV - congrats on the last chemo!  Way to go sister!!!!  I only have 7 more taxol left.  The end is in sight and I am keeping my eye on it!

JFV

Thanks Jackie-  I feel like I graduated.  Only 7 more for you. Glad you are doing well.  I recently realized that being in cancer treatment and out of circulation for about 7 months I have fallen into an alternate cancer world and am beginning to come out of it.  Rads simulation tomorrow! 

flopsy

Joan,  I start my rads tx tomorrow.   Had simulation yesterday.  I have joined the Sept rads board also and they seem very good and lots of support.  Join us if you would like.   Congrats on finishing chemo and onto Rads!!!!

Jackie, Glad to hear you doing so well.  Hang in there-- the race is almost won. 

Good luck to all and mcsushi,  So glad you are having those appts with Oncs and can finally get things going.  Take care.  LOL< GINNY IN SC