Topic: Pardon the game of 20 questions

So as you guys know, I'm supposed to start chemo tomorrow (Gemzar, 3 weeks on, 1 week off for 6 months) and I'm just.. flipping out a little bit. Okay, a lot. It's through an IV, so will it burn or anything? Is it supposed to? Will my hair fall out? They said it might "thin" but what does that even mean? Do you think I should cut my hair anyway? Am I allowed to go out in the sun and stuff? My friends started planning a trip to Disney like a year ago so it would stink if I couldn't go.. Do you really bruise easily? I'm a klutz by trade, I just walked into a door frame before. Will the effects just be after the 24 hours after you get it or all week? Do you just feel normal on off weeks? Even if I do the chemo, will it come back anyway...?

If anyone can answer anything, that would be so amazing.. My doctors had a million things to say and I was too stunned to really think of asking any questions. You guys are in the know though! big_smile

- Katie smile

Once you choose hope, anything's possible!

2 (edited by Cherbourg Thu, 05 Mar 2009 13:30:51)

Re: Pardon the game of 20 questions

Katie!

As I tell my children, the only stupid questions are the ones you DON"T ask.

My Mom (77)  had 5 rounds of Gemzar and Oxyliplatin scheduled two weeks apart.  She was fortunate and the ONLY side effect she experienced was something called cold neuropathy (from the Oxiliplatin).  It only lasted two days after a treatment and went something like this:  If she drank or ate anything cold or touched something in the frig it was similar to getting an "electric shock"  or like when you get Brain freeze from eating ice cream too fast. 

Mom made the best decision in my opinion in getting a "power port" implanted in her chest.  All of her chemo and blood draws and contrast for CT was sent through the port.  It was wonderful and something you might want to consider.    If you do get one insist on a POWER PORT. 

Mom did not lose her hair and it really never even thinned and the chemo did not hurt.  Each time before they started the chemo they gave her a bag of (I'm having a blonde or senior moment and can't remember the name of the anti nausea drug).  Bottom line she NEVER had nausea or got sick.  Aha...I think it was Zofran.  She also had two types of pills Zofran and Compazine to take at home for the first two days after chemo.  They kept her from getting any nausea at all. 

Mom did not bruise easily either.  I think the best thing to do is follow your treatment plan and live each and every moment of your life to the fullest.

My mom would have chemo (it took about 3 hours for the two of them) and then Mom, Dad and I would go shopping for my mother of the bride dress that I needed this past December.  She would wear me out!!!!!! and this was AFTER THE CHEMO!!!

One thing to remember.  Always take someone with you to take notes, ask for handout sheets if they have them and write your questions down on a notepad as you think of them.  Then take these to the appointments and don't leave until you are satisfied that all your questions are answered.  You will also find the Chemo nurses are great sources of knowledge as are the other patients you will meet also having chemo.

You are very special and in my thoughts and prayers.

All of us are only a keystroke away......

Hugs!
Pam

My Mom lost her one year battle with CC on April 3, 2009.

"A prognosis is simply an audit of how truly precious each day is.  Live each day to the maximum, celebrate what was, and what is - Don't spend your life looking forward to what will or might be." .... words of wisdom from my beloved son on hearing of his grandmother's CC prognosis.

Re: Pardon the game of 20 questions

Katie....I agree with Pam.  A port will avoid the constant poking.  My husband never lost his hair nor, did it thin out therefore, I would leave my locks alone.  Gemzar has been tolerated well by most on this site with some exceptions.  You can always read up on some of the experiences by using the Search Function on the top bar of this page.  Disney sounds great to me.
Hugs coming your way
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Pardon the game of 20 questions

Thanks for all the help Pam and Marion! A port is okay to have for CAT scans and stuff right? I always forget they ask that question on the survey thinger they give you. I'll ask my mommy about it, definitely. And yay, Disney! I'm so happy now, lol.

You'll all be in my prayers. <3

- Katie smile

Once you choose hope, anything's possible!

Re: Pardon the game of 20 questions

Katie......No problem with port and scans.
Hugs coming your way,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Pardon the game of 20 questions

Hey  Katie,
I am in agreement  with Pam and Marion, my father completely tollerated gemzar.  Any possibility of side effects did not occur, including no hair loss.
Infact my dad worked the whole time he was doing the chemo, he even went down to Florida for a week.  Sun and fun would do you good!
Peace and Prayer

The  Lord is my shephard

Re: Pardon the game of 20 questions

Hi Katie:  A friend of mine got Gemzar for a year already (for a different type of cancer).  Yes, he did lose all his hair, but it came back (even while still on Gemzar).  Here's the clincher, the hair came back dark and soft whereas before it was coarse and salt and pepper.  He was 62.  So, that was one thing he appreciated.  Yes, his tumor shrunk.

Re: Pardon the game of 20 questions

Mom said that she would recommend the port to everyone.  Has made her life so much easier.  She tolerated gemzar very well.  Very few side effects.

Good luck!!!

Re: Pardon the game of 20 questions

Hello Katie, I hope it went well today. Dad was on Gemzar for 3.5 mo. & he tolerated it very well. No hair loss either. He did not have the port, the docs indicated it could serve as a source of infection... he had a blood infection in Dec. & they weren't certain of the source.  Fatigue & 'off' taste buds were the key side effects for him.  Please keep us posted!

Tess

Re: Pardon the game of 20 questions

Thanks so much everybody!! Today went well, they said my tumor marker went from 6000 to 300, so that's good right? I really don't know what that means but my mom said she was happy about it. But my blood levels were low so I had to get this shot to make bone marrow make more red blood cells. It really burned when it went it so that stunk. sad They told me to go on a diet high in iron so I'll have to give my mommy a shopping list, haha.

The Gemzar went over well so far, it didn't hurt going in or anything. I guess we'll have to wait until the next couple visits to see if I have any reactions to it. Though while I was having it, I think I *imagined* a metallic-y taste in my mouth. I'm not sure, how weird of me. I also asked the nurses about ports and they gave me a packet about it, I thought it would be good to ask just in case. big_smile They said only if my veins harden so I hope that doesn't happen. They showed me how it gets put in and I'm just not keen on getting sliced up again just yet, y'know? lol.

Thanks so much again everyone, you're all in mine and my family's prayers. <3

- Katie smile

Once you choose hope, anything's possible!

Re: Pardon the game of 20 questions

Kati.....congratulations on your successful drop in tumor markers.  This is a pretty significant drop and I can understand that your Mom is quite happy because, I am happy too. 
Hugs coming your way,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Pardon the game of 20 questions

Hi  reduced energy level is the main problem with gemcitabine and it can be a cumulative effect so you just have to pace yourself.Hair loss is not usually a problem             Janet

Re: Pardon the game of 20 questions

Hey guys! Sorry I fell off the face of the Earth for a while there, it's been ridiculous around here.

Chemo's been... okay I suppose. It's really hard for the nurses to get a vein on me so I'm still working the port issue but I'm afraid I'll be done by the time my doctor is arsed to talk to me about it! My mother harassed him via inter office notes last Friday so hopefully he gets the hint that hey, I need a port. I've been asking for an appointment for weeks! But he finally gave the okay last week so I'll just have to call my nurse or something. It burns so bad almost every time too, it's awful. I feel like an idiot every week because I always end up crying.

Among other side effects, I was itchy for a while but that symptom seems to have gone away for the time being. I got some rashes all over my face and neck two weeks ago and I'm super tired of course. I went back to work though so I need to get over that, lol. Only two days a week for a few hours so I'm not working myself to death. I've also really had a sweet tooth which I found strange. I'm more of a savory person myself so. I dunno if that counts as a side effect, lol.

Along with the chemo I had to get these shots to make blood grow and that burned real bad too. sad They found I have a blood disease, thalassemia it's called, and that's why after surgery my blood count was low. Just one thing after another, right?

And my hair's really starting to thin out bad. Am I going to lose all of my hair? I know everybody reacts differently but it's starting to look that way.. clumps and clumps every day, my car is covered in hair. Icky icky.

I hope everyone has been doing well!! You've been in my thoughts a lot lately. big_smile

- Katie smile

Once you choose hope, anything's possible!

Re: Pardon the game of 20 questions

OMG, I cannot believe the doctor made you wait all this time for him to order a port. I am just amazed that your comfort is not being attended to. Yesterday when we went to Teddy's radiologist they had a dietitian and make up ladies walking around talking to patients!  How about getting a couple of cute little beret type hats. They would catch any of the fallen hair. Hope the port issue is settled and you might ask your doctor how to proceed with him when you have questions or something needs attention.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Pardon the game of 20 questions

Always great to get an update from you Katie, you are in our thoughts too and as always, we're wishing you the best through the fight... you have great spirits!

Tess

Re: Pardon the game of 20 questions

Hi Katie -

Keep pushing to get that port! That was one of the first things my oncologist said to have done, after my surgery last year.  It's a breeze to get the chemo drugs with a port in place.  The day after I had the port put in (on my right chest just above my right breast), I felt like my shoulder and arm had been hit with a mack truck but the pain only lasted about a week. 

One thing you may want to consider is what possible treatment you may have in the future.  Even if you have it put in now, and only have a few more scheduled treatments left, you may have more chemo later.  A port is easy to maintain, I just go to the cancer center every 4 weeks to have it flushed if it's not accessed at least every 4 weeks.

I'm starting "clean-up" chemo tomorrow, but it's been since January that I last had any chemo.  It will last for 12 weeks.  I'm going to keep my port in as long as I can, for the future, just in case.

Regarding the itching, do they give you any IV benedryl when you get chemo?  IV bendryl might help but I've heard it's VERY hard on the veins.  Maybe you can ask them about IV or over the counter benedryl.  Just a thought.

I was a inch away from cutting all my hair off because it was getting so thin, but I waited and I'm glad I did.  Unless you have big bald spots, maybe consider just wearing a cute hat, like Lainy suggested.

Hang in there girl!

- Suzanne

Re: Pardon the game of 20 questions

Hi Katie - I feel connected to you since we're both from NJ and relatively young with this disease. Although I'm 30, I only feel 22 smile Anyway, I'm on gemcitabine and a clinical trial drug. I had a port installed. It is very useful - my right arm is very thankful. Not to scare you but the port procedure was a little more painful than I had expected... I think the sedation did not kick in until after it was almost over.

My side effects have been lots of fatigue for 2-3 days after treatment and only this week have I felt a little bit of nausea. Not enough to get me sick, but just a little uncomfortable.

My hair's been thinning since I started chemoembolization treatments in January. I never get clumps but a visible amount comes out anytime I wash my hair or sometimes as I sleep. Lucky for me, I keep it short anyway, so it's not that noticeable. I read somewhere that for women, sometimes it's easier to get a short haircut before losing it all - to maintain a sense of control over it. Something to think about I guess...

Good luck with everything.
John

Re: Pardon the game of 20 questions

Thanks so much John! It sounds like my symptoms are just like yours actually, so I don't feel as bad about them. I usually get really ill during the week in the middle though. Except I'm only on the gemcitabine.

I actually have gotten my hair cut on three occasions now, and it's at the shortest it's ever been I think. It's still falling out a lot, but I'm half way done with chemo now so I just hope my hair holds out long enough. Just have to make it to September!

I finally got my port put in on Friday guys! I think I freaked my nurses out though 'cause talked through the whole surgeryy! About cereal mostly, 'cause I really wanted Cocoa Puffs and I couldn't eat. sad I had chemo a few hours later after I slept for like ever (and slept through my appointment with the doctor, lol whoops.. I was in the room though, my mom talked to him) and it was soo much easier with the port. I just wish they came in pink!

The incision still sorta hurts though. I threw up everything in my stomach when I got home. I guess I shouldn't have eaten, huh. I have a CT scan this Friday, so I hope everything looks good.

I just wanted to check in. I hope everyone is doing well!

- Katie smile

Once you choose hope, anything's possible!

Re: Pardon the game of 20 questions

Great to hear from you Katie, thanks for keeping us updated, we think about you and wonder how you are doing! Your spirits remain so high, even with the many challenges you describe, you're an inspiration to us all.... Keep it up girl!  It seems as though there should be someone you could talk to about getting that port in pink, that's not a very big request. And I'm sure your hair looks great, short is all the rage for this summer - so you're right in style.

Take care of yourself and keep those spirits high, they are contagious!

Best to you Katie,

Tess

Re: Pardon the game of 20 questions

Hello Katie....Katie....thanks for checking in. I am happy to hear that you are equipped with the port and the nurses don't have to poke you anymore.  As Tess has mentioned:  short hair is just in style and it will keep you cool for the summer.  And then, September is just around the corner.  I haven

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

21 (edited by derkuchen Sat, 25 Jul 2009 09:14:54)

Re: Pardon the game of 20 questions

Hey guys!! I'm sorry it's been such a super long time since I posted, but I've been trying to keep busy with working, doing the camp counselor thing at summer camp, crafts and stuff.. I'm happy to report chemo is almost done! I have three more appointments for gem and then I'm done! I hope. I just have a CT scan after it all to see where I'm at.

I'm so excited! I can't wait for my hair to start growing back. I forgot my hat one morning for camp and my scalp burned so terribly. There's nothing worse then a peeling scalp. Oh, and I even registered for fall classes! I'm so excited about going back to school, I picked some really interesting looking ones and I can't wait to get back to it. Everything is just going back to normal.

My family is going on our family vacation to the shore next week so that'll be fun too. Oh, Disney was super awesome!! It rained at the same time every day but we saw everything and I didn't even sunburn at all! smile

The only problem that I've had I think is consistently low red and white blood cells, they almost couldn't treat yesterday. (My doctor says that .. something has to be at 1.5 to do it, and I was at 1.4) Is there anything I can do.. or eat to get them back up? I'm not terribly worried about it, but I guess eating right and taking a multivitamin doesn't cut it these days? lol And like. Pain in the port, even when it isn't accessed. Apparently mine is at a funky angle and I even got the numbing cream but it still makes me cry (like a wimp! aaah I hate it lol).

I hope everyone is doing well, I've been thinking about you a lot! People have asked me about my bracelet a few times so they have been helping with awareness. You're all in my prayers! <333

- Katie smile

Once you choose hope, anything's possible!

Re: Pardon the game of 20 questions

Hi there and that is some great news. Your vacations sound wonderful and your attitude is stupendous! Keep up the good work and we will give you a A's!!!!!

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Pardon the game of 20 questions

Sounds great. I havent lost my hair yet, though it is definately thinner. I told my husband that if I lost it, when it came back Iwould dye it pink or purple...he almost had a heart attack. Keeping cancer "fun"is a key for me and it sounds like it is for you too.

Best of luck on your next scan.

Kris

Cancer is a word, not a sentence.

36 year old patient with buckets of hope

Re: Pardon the game of 20 questions

Great to hear from you Katie, so glad to hear that things are going well.  Enjoy your vacation next week and remember the SPF!!

-Tess

Re: Pardon the game of 20 questions

I've been so busy with school and work I haven't been able to update. I'm so sorry everyone. I'm here to bare the good news though: As of a few weeks ago, I'm in remission!! Yayyyy! big_smile

I still have my port in and I get that flushed every six weeks, and a CT scan every 3 months, but the chemo seems to have worked! I'm so happy! I've been trying to reach out to people I know with family or friends with cancer to try talking to them and make them feel better. I'm dropping my education major and I'm going to try to go to nursing school to be a chemotherapy infusion nurse!

Now that I'm starting to get back to normal, I'm looking at ways to try raising awareness at my college, even if I'm by myself. The other day I was thinking how mad it made me breast cancer got so much attention, but it only does because people went out there and did something. Now I know what I have to do!

I hope everyone has been well and is enjoying the new blessing of cool Autumn weather. You're in my prayers every week at mass! <3 <3

- Katie smile

Once you choose hope, anything's possible!