April 2013 Chemo Group

OnaWing - looks like we're both pulling all nighters, although for EDT you're morning paper might be there already.  We're still at 4:30am here.  Sorry to hear of all your SEs.  I'm on carboplatin instead of cytoxan, but YES i think the extra saline makes a huge difference.

I ask my MO for extra for tx#2 and got 1000ml.  Ask him for extra again for #3 and got 1000ml through out the day mixed between the chemo drugs and an extra 1000 ml at the end.  My tx#4 is next week also.  And I'm going to make sure I have that extra fluid again.  I went in for a PET/CT today and they put in a needle so nuclear could use the port.  I even had the MO arrange for infusion center to run another 1000ml this afternoon before they took out the needle.  It takes about an hour for 500ml - so 2 hours for 1000ml, but if you have the time I'd recommend it.

kerri -- my 16yo reacted a lot like your daughter when I shaved my head. He was angry because I shaved it when I "didn't need to". I think part of it is that teens don't want to stick out -- they want their mom to look "normal". Anything that draws attention to a teen, can be uncomfortable. My guess she is worried that her pictures at graduation will look "funny".

If you can hold out until graduation, that might be good... otherwise, ask her opinion and get her help in chosing how you will look... shop for a cool hat together, etc. Hopefully, if you get her involved in the process, it will help. (but maybe not, my 16yo is still ticked that I shaved my head! LOL)

OnaWing -- I agree that your problems might be related to the amount of fluids you got during infusion. However, I have worked fairly successfully in dealing with the mouth sores. My doc is anti-vitamin/supplement. I researched what vitamin deficiency can cause cracked corners of mouth, mouth sores, etc. What I found was that the B-vitamins seem to play a big role. I started eating pasta and/or bread (both are b-vitamin enriched) at each meal, ate other b-vitamin rich foods and it took care of almost all my problems (except I put on some weight).

Additionally, I continued the doctor recommendations... salt+baking soda mouthwash/gargle up to 4 times daily, magic mouth wash (swish & swallow) up to 4x daily, spectazole 1% cream twice daily in corners of mouth (Rx, prescribed by dermatologist), and Aquaphor ointment in corners of mouth whenever I noticed they were dry. I also have dentures, and the doc said to go without them whenever I could -- so I look like granny part of the time!

Hope this helps someone -- the spectazole cream really helped clear up the remaining cracks in the corners of my mouth!

Went to doctors Thursday got the ok to start chemo again on Wednesday! The viral meningitis seems to be cleared up!! What a ride that was. So finally last ac will be done and over!!!! Then start taxol and herceptin for 12 weeks. Has anyone that has started taxol had much se with it. I just want this over with and give me my life back! I quess by November most will be behind me. Just the herceptin left until next July. I can and will do it,I just dont have to like it.

Onawing, it can't hurt to ask for the fluids.  The one thing I noticed was that no two rounds were exactly the same.  My first was terrible with lots of SE's.  My second hit the day after infusion and went for 7 days and then I felt pretty good.  My third brought increased shedding (I'm doing cold caps) and bone ache.  My fourth was fabulous and I never got that hit-by-a-truck stage and had virtually no SE's at all.

But if your instincts tell you the fluids are the difference, then you should definitely request them.  Instincts do more for us than we realize.  Good luck

Indenial, glad you are done! Soon you will be feeling better! Yeah!



I had heard that a lot of people become "down" when treatment is done. We've ridden this roller coaster, some for longer than others, and then suddenly it stops. There is an adjustment period to getting your "land legs" back. I think of it as planing a wedding (without the joy!). , busy making appointments and doing all the stuff to get there, then it is done and you wonder what you used to do with your "spare time". Forewarned is forearmed.



6cats, if my husband turned me down I would be in shock. Seems he is always raring to go...even after funerals! Sorry you were turned down.



Anne, I haven't had those treatments, I'm sure someone can answer sooner or later, or go checkout the April Chemo board. Glad your meningitis has cleared up!



I am freaking exhausted. Oldest had two regents this week. Middle guy can't get his papers together to study, went through his folders today, as he had no school,and discovered there are no study guides??? So an email into the teacher , awaiting a response. Went to weight watchers today and could not decide to stay or go...i had taken off 25 lbs, then purposely put weight on thinking I would lose with chemo...played the game and i lose! lol. I have gained weight with chemo. so finally decided to re-up and will continue, hoping I'm not throwing my money away, as i will be having surgery in the fall and also have Tamoxifen to start....Have my final Girl Scout meeting tonight and am finding half the girls might not all be there because this lousy weather has pushed softball championship to tonight. And I have the local Relay for Life I am going to go and check out early evening...which brings up a whole other emotional piece. I'm drained. Started taping off sons room to paint and I also wound up priming. Now I ruined the manicure I gave myself last night, still need to finish cupcakes for meeting and get badges, plates, cups etc ready..... This is my Last weekend to "enjoy" myself before chemo #3 on Monday and final exams all around for the three kids next week. Uuugggghhhh! And I wonder why I am tired?

Time for coffee, while I can still enjoy a cup. Oh, guess I better take my vitamin D as supposedly it will give me energy? LOL



Pat

annie11595 -- so glad your viral meningitis is cleared up. Looks like we will be on close to the same schedule on Taxol+Herceptin (I'm one week behind you). So glad you are feeling better.

indenial -- congrats on being finished! This is such an emotional journey -- no wonder you are wiped out! Feel better soon!

shipsgirl -- 1% spectazole cream is prescription. I think it is used for thrush and similar types of yeast overgrowth. Got it from the dermatologist.

Pattysmiles & PamelaKay -- exhaustion! That seems to be my word for the week -- and I'm only on day 5 post chemo. If I were creative, I'd write a song or poem about exhaustion... but I'm too tired.

Indenial-- congrats on being done.. I CANNOT WAIT to say that!!



Today I'm having a little "pity party"

My hairs coming out more and more... Head hair in clumps, leg hair and even hair "down below"..

I knew this was going to happen- but still having a hard time..

So- I'm sitting out on my deck- in the beautiful sunshine-- and drowning my sorrows in the one glass of wine I'm allowed to have..



Hope all are having a great weekend!!

Kerri

I love you gals, just reading all the Congrats etc. has really lifted my spirits. I made it past my worst day and I think it's all going to just get better from here. It's still sinking in that I'm really DONE!! 

Katie, I am also starting Tamoxifen in less than a month. I have so many questions/concerns about post-chemo stuff, Tamoxifen, supplements, etc. but trying to take one day at a time & first fining recovering from this last round & stay healthy 'til my WBC goes back up. 

I also feel compelled to shave off these little stray hairs so I can start from scratch with non-chemo hair but then I realized everything is chemo-tainted now & probably will be for the next year or so. Very curious to see how my body recovers from all this. Having a chronic illness for the last 7 years has made chemo easier in many ways. I am used to being sick, used to having limitations... but part of me is so hopeful (yet afraid to hope!) that chemo killed the chronic illness too & maybe I can be healthy & myself again for the first time in nearly a decade. 

When I read that chemo SE are cumulative I didn't really understand what that meant, until treatment 4 - uggg. I've had such a difficult time coming out of the doldrums, aches, pains, constipation, upset stomach and extreme fatigue. I've been sleeping a ton in order to cope and that helps but I have no appetite which means further weakness etc. I hope I snap out of it today. The thought of two more treatments with similar SE is depressing but I am hoping for good news today. I had a PET scan Saturday and my onc promised she'd call today with results. 

@BeHereNow- were you able to by-pass radiation? if so, congratulations(: on that --

Is tamoxifen the five year pill and is it considered chemo as well? And so you lost your hair during chemo and things in that ares are not looking much better with this pill?

My head is swimming.. I hope to get a definite treatment plan on Friday. I have a Pet scan on Wednesday and the results from that along with my pathology will determine what my treatment will be exactly-- I am trying to educate myself but it is not easy without all the facts...I am gaining new knowledge on this site from all of you every day..just not sure what to do with it just yet-- I'm trying to build an arsenal of tips and such that will help alog the way...

You are all so brave!!!  My prayers and positive rays are with each and every one of you going through the recovery trials of this monster disease...

MsPharoah,Thanks for the post. I am post menopausal as well. I will be having radiation following the chemo and then the pill for 5 years too.. scary stuff....

My sis in- law, and well meaning friends keep sending me alternative treatment options, drops to take , juice to drink.. I am trying to wade through that information as well-not sure how to react to it, or how to respond to them-- have you run across this during your treatment? Can anyone weigh in on this? thanks...

sarajaneevans -- I had friends and family bringing me pills, concoctions, recommending chinese medicine, etc... all with an air of authority. Some seemed very logical to me... but honestly, I would recommend you wait until you talk with your oncologist before taking anything. I've always been a vitamin popper, and I immediately thought that supplements would help. At my second visit, I talked with her about it... she said, take nothing but the calcium & vitamin D I was already taking, and if I couldn't stand it take standard multi-vitamin like Centrum Silver (not a multi-vitamin formulated for women or anything like that).

When I asked the reason she said that there had been a study that showed that Vitamin C inhibited the effect of certain chemo drugs, and that there wasn't enough research to know what was safe and what wasn't. She said that the goal of chemo therapy was to kill cells -- and the drugs kill both the bad and the good. If I were taking a supplement, the goal of that would be to build up the body, the cells -- and that supplements potentially could feed both bad and good cells. I actually found the study she referred to and she was right (sorry I didn't save the link).

I made the decision to use normal everyday food as my supplement -- but only foods I could buy easily at our small town grocer. I can't afford to feed our family organically, or I'd probably switch to that. Except for the fatigue, most of my side effects have been managed by changes in my diet. I've almost doubled my intake of fruits and veggies, had to add back bread and pasta to up the B-vitamins, had to cut back on milk shakes and the like. Now... if I'd eat liver I could probably get rid of some of the fatigue!

You seem like someone who is frantically trying to gather as much information as possible to try to stay in control of an uncontrollable situation. Remember you can fight this best if you are mentally and physically healthy. I ran into an acquaintance recently who had mets to the bone... she said, that she had worked herself up so badly she was sick -- she finally decided that if her doctors were worried about something, then she would worry... but she wasn't willing to worry herself sick about something her doctors weren't worried about. It was refreshing to hear her calmness and acceptance of a stage 4 cancer. She actually gave me joy and strength when I thought I should be the one to give her comfort.

I hope this helps....