Hello friends,
I had the consult with the chemo oncologist and here is the plan. On the 23rd I will have my first round of chemo, five hours of taxtorate(sp??) and Cisplatin. Then 3 weeks later I will have the same two with F5U added. I'm having a port put in this week, not sure yet what day. Can I tell you that I'm scared to death of this chemo? Everything I've been through and this is the most fear of a treatment that I've experienced. I liked the doc, he was easy to talk to, kind, and to the point. He said I will lose weight and that I'll lose my hair. Yeah. It will be summer here so guess it's the best time of year to lose it. He also said there is a 60% chance of the tumor responding to the chemo. I didn't dare ask him what we'll do if it doesn't respond. I kind of already know........surgery and cyberknife radiation. Let's all keep our fingers crossed that the chemo works.
My mom arrived Saturday so the girls have additional help now. Last Softball game is Friday do I will be able to finish out the season! Camps and Clinics don't start until July so I'm hoping I'll feel better by then. The kids are taking it all pretty well, as is my husband. My second daughter graduated from College on Saturday, Regent University, Pat Robertson himself is the president.......man is he getting old! Another milestone I was able to be at. I'm a lucky woman.
Take care,
Minnie
Minnie
No-one can start a journey unless they take the first step, so Lady one step at a time.
With your family all supporting each other please take some serious time for YOU..
The odds the doc has given you are better than they would be in reverse order.. So forget the numbers and concentrate on getting through this as all of us here are certain that you can..
So Lady lets see you ready for a fight..
Sunshine.. love and hugs
Helen
Minnie- Best of luck to you on this new leg of your battle. Hang in there knowing that lots of people are pulling for you!
Sue
Minniea,
Lets all pray that this will be the end of it. You have been through a lot for sure so I know you will find the strength to get through this.
Minnie, I have you in my prayers . Like Helen stated, the 1st step has to be taken to make a journey. They said I would lose my hair, but here it is months later and I have an almost full head of hair. I don't have much to shave, but that makes it better. My wishes are with you .. Jim
Minnie -- We are all here for you and know you will come through with flying colors. Don't fret statistics -- you are an individual, and you will beat this one just like you came through before. There are lots of people on this site who still need your support!! In the meantime, we are all there for you.
I'm thinking of you Minnie and sending all the love and light I can to you. Helen
Thinking of you Minnie. All of us here will be right behind you all the way. Not a fun thing but it is a must!!
Take care and hugs to you!!
Diane
Minnie, we are all honored to walk this walk with you. Thanks for the privilege. We'll all be here, every step of the way, even when you don't feel like writing. Know that you will be in our prayers many times each day.
XO
Minnie,
I think about you everyday and you are always in my prayers, as is your entire family. I agree, one step at a time.
Keep us posted.
Love,
Donna
Minnie,
Make sure and keep hydrated. Maybe even move towards the gatorade type electrolyte products, especially with summer coming on. Don't forget you are truly one of my heros! I wish we didn't have so many miles between us or I would walk literally by your side through your treatment. I know the room will be full of people and full of love and of course, full of loving spirits of many, many people. Praying especially for comfort and peace for all of you.
YBIC,
Ed
Minnie, Add me to the list of people that keeps you in my prayers. I can understand the fear (I was very scared of the chemo part of my treatment too) but I'm also glad you have a plan because being in that gray area where you aren't sure what to do can also be very hard.
I'm sorry this is chemo that will cause you to lose your hair. I thought originally the cisplatin would do that to me and ordered some chemo hats and scarves because I thought wearing a wig would be awfully hot and itchy. I actually still have them (I've been meaning to take them to the breast cancer alliance in our town) but if you want them, I'll send them on (I never wore them because I didn't lose much hair so they're brand new). Just mail me your address if you want them.
I hope you handle the chemo well. Make sure they give you the really good drugs for controlling nausea, like zofran, right away. Don't let them tell you compazine might work and go through trying it, and finding out it doesn't first (can you tell this is what happened to me<grin>).
Actually, I'm sure since you're being treated at Johns Hopkins, that won't be a problem.
I'll be praying for you and your family. Please keep us posted about how it's going when you get a chance.
Nelie
Minnie,
My mom needed the zofran also, as the compazine didn't help at all. She only had two days of nausea-thank goodness.
Minnie,
I have been wondering about you. Sent you a PM but I bet your
box is full of them!
Please tell us everything, I know we all want to be with you. You must remember, I am in Virginia and I have always wanted to meet you. If you need me, I am there. I feel how scared you are. I get that way deep down in the gut. But you are so strong and have so many people who love you and pray for you.
May the road rise to meet you and the wind be always at your back!
Debbie
Minnie,
You are constantly in my prayers and will continue to be until you get those wonderful words, "cancer free"
Jerry
Minnie
You are in my prayers and thoughts and I also satnd beside you during this .. You and your wonderful family !! Please know that I as well as MANY MANY others are here for you ..and I have the utmost faith that you will Once again here those words ...cancer free !
Shar
Minnie,
Keeping you in my thoughts and prayers that you will remain strong and confident through the chemo and that you will recover quickly as well as cancer free!
Laura
Minnie,
I am praying my best Irish prayers for you. Keep strong!!
God Bless You.
Mike
Minnie,
May you be blessed with a complete recovery. Don't let the fear of the future rob you of the good days you are enjoying with your family. May you continue to celebrate their milestones in good health for many, many years.
Malka
Minnie, I am thinking of you and praying for you.....Love, Carol
Minnie (my personal hero)....sending warm and positive thoughts your way....You're are a constant source of inspiration to all of your 'family' here...
Lois & Buzz in NC
Thank you everyone, I knew I would come back on here and read things that would lift my spirits up.
I go tomorrow for a blood test to test the coagulation of my blood and then Wednesday to have the port put in. Not sure what to expect with that, any of you guys have it?
Also, do you start feeling badly as soon as the chemo is administered or does it take awhile? I'm already going in there asking for Zofran (they mentioned compazine and I said nope) but I'm so clueless about the actual administration of chemo and I hate not knowing everything. I understand the effects it can have, but when does the "bad" stuff start to happen?
Love to all,
Minnie
Ps. Nelie, if I start to lose my hair, I would be honored to have your scarfs. My 10 year old grandaugther has been staying here with us, we have to push her to go home a couple nights a week........said she needs to stay here to take care of Nana. Her name is Kayla and she has a beautiful soul, so gentle. She's 10 and told me Saturday that she was going to buy us matching scarfs and she would tuck her hair up under hers so I wouldn't feel "alone". She also asked me if I was going to die......geez, I hate that question, I remember when my 12 year old, who is now 17, asked me that. I told her not if I could help it and she seemed satisfied with that.
Minnie- my husband has a port and the procedure to install it was no big deal. We were home in a matter of hours. He is so glad he got it-much easier that getting stuck with a needle. When he was on the Cisplatin he didn't have many side effects. They gave him meds to halt the nausea beforehand. With the Erbitux he had mostly skin changes-no nausea. This time the Taxotere is kicking his butt. He had three treatments before his hair fell out. So much easier for a man, he has a crew cut. It really tends to make him sick to his stomach for a few days so he is taking the Compazine but I think he will switch to the Zofran. Kytril is a great anti nausea med but it is really expensive so ask it the nurses have any samples and sometimes they can order it as part of your treatment. Good luck and your grandaughter sounds like a wonderful girl.
Sue
I just went to the beginning of this thread, since you do chemo every 3 weeks then you are likely given fewer treatments at a higher dose. I.e. talk with your MO re cisplatin side effects which you asked for in a different thread.
Re port, that is a snap. Not a big deal at all. It makes everything so much easier, you hardly feel the prick and it work every time. Removal is also easy (15 minutes or so), not quite a quick as the PEG tube, though!
M
My first chemo Tx was not bad at all. My second one knocked me for a loop so it could have been the cumulative effect of the chemo and/or the fact that I had 15 rad Txs since the first? I do know that nothing stopped or helped my nausea from then on. Ugh.
Minnie, Could you just PM me your address and I will mail you the scarves. As for when the effects of chemo set in, I just had cisplatinum so whatever I say here your mileage may vary but how it worked for me is I was OK and not badly nauseated the day tehy gave me the chemo because they give you so much IV stuff to control the nausea at the same time. The next day was when the nausea hit but it didn't get really bad until 2 days after the chemo. I was trying to control it the first time just using compazine until day 3 after when I had been up all night with the heaves when they finally broke down and gave me zofran. After I started on the zofran I was still nauseated but it wasn't nearly as bad in terms of actualy vomiting except during the hour or so when I had the amifostine in me as well.
I continued to feel pretty bad for another week then felt better again in terms of nausea. However, I think it was about two weeks after the first chemo when I started to have seriously falling red and white blood cell counts and that got so bead it delayed my second chemo.
In terms of the actual administration of the chemo. The worst part for me was having to just sit sit sit there for HOURS. Bring videos or a good book and fun people to talk to.
As for the port, I had it and the PEG done at the same time so they made me stay overnight though nornmally it would have been an outpatient procedure if I'd had just it done alone. The site was a bit sore and sensitive afterwards for a couple of days but really not even much of that. After everything you've been through, this won't even hit the radar in terms of any discomfort.
Your 10 year old grand-daughter sounds like such a sweetheart. How wonderfully empathetic to want to wear her hair under a scarf so you won't feel alone. I hope you find time to go scarf shopping with ehr beforehand and find something really pretty you both can wear!
I am thinking of you every day Minnie, and sending prayers for your ease and comfort through this next leg of the battle.
Nelie
I must be one lucky guy. I never lost my hair or got nauseated one little bit. I did lose the hair on my chin and don't have but about 10 hairs to shave. LOL I hope you do the same Minnie only not the shave bit.
Minnie,
Bill's port was such a Godsend...he was so happy to have it for any procedure...bloodwork or chemo. The MO gave him a script for numbing cream to swab on it 1/2 hour before he came for treatment..we just gooped in on and covered with a square of saran wrap to keep it off his clothes. Made the stick painless...just pressure when they push the needle in.
He still has his port..hates to get rid of it, but has decided to have it taken out in a month or so. He wants to wait till after our vacation in case there are any problems.
Deb
Minnie,
I wish you good luck this week and all the weeks to come.
One of my partners has had a port for over six years as he has been switched back and forth on chemo by IV and by mouth over the years. It was no big deal getting it put in and has been used many times for the administration of many other drugs. It has been a blessing for him.
Jerry
Minnie, I am thinking of you and praying, Love you, Carol
Hi, Minnie,
The port is not bad to put in and makes the treatment and blood drawing so much easier. My husband had the same three chemo drugs you mentioned at the beginning of this thread for his induction chemo (he had all 3 at once with 2 given over the course of a day along with fluids and nausea meds at the hospital and then the 5 fu pump was started there and continued at home for 5 days). Then, two weeks off and then all three over again. He had his chemo begin on a Monday and the 5 fu pump was removed- by me with my hazmat materials handy!- on Saturday. He felt fine during the actual chemo day infusions (was given stuff for nausea during the actual infusions and continued it during the week) but about a day or two after the 5 fu pump was removed, he bagan to have thrush and some minor mouth sores and pain. He began a low dose fentanyl patch not too long after that (I can't remember if it was a couple of weeks after the first round or after the second round) and actually got through the second round pretty well as he had the pain meds, breakthrough pain meds, nausea meds and meds for thrush and his rinses. The 3rd round was a bit tougher but he still felt pretty decent at the end of it. In addition to zofran, he found lorazepam (both calms, helps nausea, and helps sleep) helpful. He took compazine a couple of times.
I think that you already know about rinses, thrush, the peg tub and what works for you with nausea and pain, constipation so you will do better than he did. You will be much better prepared and you have already dealt with mouth pain so it won't be so suprising to you. You know what works for you in terms of food. For us it was the beginning of treatment and we had to learn everything that worked for him as the symptoms developed and we weren't always able to address side effects quickly and in the best way for him. He did lose his hair and that began after a few weeks at which pont he shaved it off. He was able to eat all the way through this treatment but his mouth did begin to hurt and he did use the peg tube to supplement his fluids and calories.
Your treatment is definitely more intense than just getting cisplatin. It is 3 types of chemo drugs and I believe at higher levels. Please let us know if we can tell you any more about our experience with this treatment.
Best wishes- Sophie
Minnie,
I trust that you are holding up well and the outcome will be good news. You certainly have the best medicine available - your terrific family. I have found that all the information is helpful but this cancer stuff is like the best and worst of having a baby - you just have to get through it and pray that everything will be fine.
Malka
Minnie, I was thinking of you on the 23rd (it was also my Dad's birthday so an easy day for me to remember). I hope you are doing OK with the first round of chemo. Actually, you've been in my thoughts (and prayers) every day since then too.
Nelie
Hello friends, I have entered the land of the living again! Chemo and I did not make friends and I don't see a good future for us. The day of having it put in was fine, shoot they gave me a big bag of benadryl that knocked me out for the entire time. My mom literally had to wake me up to take me home. That night I was achy and tired but it wasn't to bad. Day 2 was when the storm hit, the nausea set in and made itself comfortable. I only vomited 4 times over the next three days but the nausea stayed with me. I have decided that I would rather puke than feel like I have to puke! They gave me a shot the second day for my WBC and it made my body ache, alot. So, out came the compazine, the zofran, the tylenol and the vicodin. The compazine suppositories (fun, fun) seemed to work pretty well and I also used some of the very expensive Zofran but nothing took the feeling away. By day 5 I was starting to climb out of the hole and today I feel much better. My big concern now is getting strength back. I've fainted twice trying to go to the bathroom and it really scares my mom. I'm slowly introducing the Carnation VCU, very watered down, along with some baby foods. I lost 9 pounds in the past week but I had gained extra so I'm ok. I've already gained back 2 pounds.
I find that all I want to do is sleep..............so I do. Whenever I feel like I need to, I sleep. And it's healing powers are noticable.
Nelie, my address is 4524 Revere Drive, Va. Beach, Va. 23456, last name is Ashworth. I told Kayla a special person was sending some scarfs so she's excited. I'm keeping a close watch on my hair, so far I'm must noticing more of it coming out when I brush it or wash it than usual, not sure if that's a sign. I'm prepared either way.
My thoughts are consumed with the fact that I have to do this again in a couple weeks.............where do we find the strength?
Love to all,
Minnie
Oh, Minnie, what an ordeal. Oh, how I wish we could all pray hard enough in one big group prayer circle to make all of this go away for all of us....BUT it's not an option. Your spunk and your good humor and your faith will get you through it...and while you're at it, you continue to cheer the rest of us. Know that you are in my prayers during this trying time.
XOX--Colleen
Minnie,
I sure you will find the strength to do this. You have that mental toughness. BTW it's Carnation VHC. VCU is that University close to you in Richmond. LOL
Where do you find the strength indeed! Hopefully, when you don't have it within...from your creator, your family, and your friends here at OCF.
Sending cyberhugs and prayers,
Deb
Minnie,
I responded to this thread a while back when you described your chemo regimen. I realize now when thinking back on my husband's experience that it is very different and very difficult when you get the multi-chemo regimens that you are having as each drug does different things and has different side effects. I had mentioned before that the first one really hit my husband hard but the second and third were easier as he knew what to expect and took all of the things you mentioned such as the anti-nausea arsenal and knew that he would feel pretty bad for about 5 days and then feel better. It sounds as if his nausea was more easily controlled than yours but in retrospect, it was a very difficult course of treatment. I'm so sorry you have to go through this but it really worked in his case - and he had some respite between treatments.
Sophie
Minnie,
I will get those scarves in the mail to you tomorrow. I had forgotten all about compazine suppositories (which I also had to use at times). I also forgot that feeling of thinking you'd rather actually vomit than feel like you are on the edge of it all the time. Yuck. I'm sorry the chemo hit you so badly but I see you being such a fighter as usual--working to regain weight as soon as you can for example.
If you're swallowing stuff (sounded like maybe you are with the mention of babyfood), I have created a new shake recipe that involves creamy caramel ice cream and hazlenut milk that is yummy and fairly high calorie. If you are feeling up to it, I'll be glad to post it.
As for the fainting, have you had your BP checked? I tend to run low and have had my own fainting spells over the years because of that. If you are running really low yourself, I wonder if there isn't something they could give you. But I'm sure you're right that the best medicine right now is sleep sleep sleep and nutrition.
We'll be here for you when you have to go back for more. I hate it that you do have to, though.
Nelie
Hello Minnie,
I have checked every day to see your post. I sure have been thinking of you. I am so sorry it was so bad for you. You are good
to just listen to your body and rest and eat as much as you can. I will say prayers. You are a strong lady and have a lot of family and good friends to help you pull through. Please let them help you, and please keep us posted. I have emailed everybody to see if
they heard about you.
Keep fighting and keep faith
Debbie
Hi Minnie,
Glad to see you back. You've been on our minds. I wish you continued strength and an easier time of it the next round. We're rooting for you.
Minnie:
I wish you the best with your treatments. I have been reading your updates and about your treatment plan. When I read about your fainting, I also thought about your blood pressure. Ive been struggling with mine being super low since losing more weight (it runs 76 over 52 now). The docs said when someone rapidly loses alot of weight that they can get low blood pressure. Be very carful when standing up, do it very slowly.
Ive also had to go thru those awful compazine suppositories. Those sure arent fun. Zofran for me works very well for the nasuea, as long as it was taken early enough.
Keep your great attitude, thats a big help in getting thru this awful fight. You are in my prayers.
Hi Everyone,
Just wanted to say hello and give a quick update. I'm still pretty weak from the chemo but alot stronger than last week, so that's a step forward. I fainted AGAIN four days ago and it was a bad one, I fell forward and hit my forehead on some built in bookcases we have and the hit really did a number on me. They took me to the ER where they gave me some fluids, etc. Now I have a forehead that is a lovely shade of green and two matching black eyes. Not just slightly black mind you, they are red, black, blue and it goes down to the middle of my cheeks. Seems I can't do anything small lately! We laugh about it now but it really did scare my poor mother when it happened.
I have my next chemo treatment on the 13th. Should I start taking the meds for nausea before I go or wait until I come home? I want to try and keep ahead of it this time, especially since they're adding the F5U.
I've lost alot of my hair but I had thick hair to begin with so it's not so noticable yet.............thank you for the beautiful scarves Nelie, I'll be using them sooner than I thought. Losing the hair is going to be depressing, I can just feel it.
My 5th daughters 16th birthday tomorrow...........where does the time go? She was 11 when I was first diagnosed. I do feel blessed that I'm still here with her.
Love to all,
Minnie
Minnie,
Wow, when you faint you do it in a really big way. I'm glad you're OK from that and no concussion or anything. I can see why it scared your mom. And what a bummer about all the bruising--I hope that goes away quickly.
I'm glad you got the scarves and that they will be used though I'm also sorry to hear you're losing your hair. If I had lost most of mine, I think I would have been depressed by it too. Partly because it visibly brands you as a cancer patient and some people react to that. But on the bright side it also might be nice and cool in the summer I guess! Thought you might appreciate this NPR piece in relation to that:
http://www.npr.org/templates/story/story.php?storyId=5744965As for your next chemo, I would ask your medical oncologist, or the chemo nurses, about taking meds ahead of time. I'm pretty sure I asked that and they told me it wouldn't make any difference as they loaded me up with anti-nausea meds intravenously before giving me the actual chemo. But you're having a whole different treatment than I did so maybe it does make sense.
Happy sweet 16th birthay to your daughter. I'm sure she feels doubly blessed that you are there with her for it. You're always in my prayers but will especially be on the 13th.
Nelie
What do you contribute the fainting to? Is that from the chemo messing with your blood chemistry?
Until they go away you need to wear a helmet, a mouth guard and knee and elbow pads.
Hi, Minnie,
I would start some anti-nauseau medicine before the chemo begins. My husband's blook pressure dropped during treatment and we had to lower his blood pressure meds. I think the chemo may have been one cause. Sorry you fell- he fell a couple of times but didn't hit much of anything.
Minnie,
Your mother had a right to be scared! You hurt yourself badly!
Please ask your doctors before your next treatment for more info on this. Also move your favorite chair to the center of the room
for awhile. So glad you have your mother there with you. Enjoy
your daughter's day. I was so grateful that I got to go to my youngest son's graduation from college. Just so grateful. Every day should be so good. I know you will have many more of them. Your spirits sound good, and that is such a blessing!!
Take care and don't stand up too quickly.
Thinking of you,
Debbie
Minnie,
I'm glad you haven't lost your sense of humor in this whole situation but, am equally glad to see you are OK after the faint. When I read that you had black eyes ( prior to reading, rather than scanning your post) I had assumed you pissed a Doc off! LOL
All kidding aside, I continue to be amazed by your strength. With all the sh#t you have been and are going through you are still focusing on your children. If only every mother could follow your example. I personally don't think this disease can bring you down and I have said it before and I'll say it again...Minnie, you are a true inspiration to us all and if we could we would never, NEVER pick you for this turn of events. I guess God knows who can take the ball. You, apparently, juggle it between looking after your family, counselling us on the site, and chemo visits. Who knew?
My bad senses of humor aside, I wish you all the best thoughts and prayers I can. You offered kind and loving words to me on more than one occasion and they were genuine, thank you.
Peace and all the best to you, Minnie!!
Luv,
Mike
I have been having fainting spells as well when I gas up with fuel being close to $5 a gallon in Kalifornia. Of course that pales by comparison to organic milk which is up to $6.29/gal.
But seriously it's probably blood chemistry (low wbc/rbc etc.) related from the chemo protocol. I had many fainting spells during Tx and had to move furniture and dangerour items, to fall on, to safer locations. I also would sit up for a bit before attempting to stand to allow my equilibrium some time to adjust.
I am sorry that you hurt yourself so severely - that sucks.
$5.00 dollars a gallon? ours is $10 dollars a gallon now and i need a mortgage every time i fill up.
Liz,
They don't get it over here. We've had cheap gas for so long that they think it should stay that way forever while they drive their low mileage SUVs and Hummers. It really has only reached $5.00 a gal in a few places. Right now it is still under $4.00 in NJ but we tend to be cheaper than the rest of the country. Also remember you are talking Imperial gallon vs. US gallon. It's good for us. Maybe the country will drive less and go out and buy one of those nice cars like Europeans drive that get 35-50 miles to a gallon. It's better for the globe.
Take care,
Eileen
Sorry Minnie to sound off about gas prices on your thread.
Geez-Louise, been wondering where you have been and there you are flat out on the floor. No wonder you haven't been posting. Have they found out what is making you pass out? That's scary.
Are you certain you didn't break your nose? With all the marvelous colors, it almost sounds like you may have. Did they check it Wait to you go from red and purple, to yellow and green. It's great fun. As you can tell, I have whacked mine a few times, even needed a rhinoplasty to put it back together.
Oh well, here's hoping you are feeling better and as Dave says, time for the helmet.
Take care,
Eileen
Cookey,
Thanks for letting us know how grateful we should be that we live in the USA and are ONLY paying $4.00 on the East Coast and $5.00 on the West Coast. I don't think I would want to live in Venezuela where the gas is about 18 cents per gallon.
Gary,
Nice to see that you have picked up your Govenor's accent. Those of us that live on the East Coast and listen to Leno, are aware of Arnold's pronunciation of your great state. I'm glad I don't drink organic milk.
Minnie,
As always, you are in my prayers. I'm still counting on meeting you when you are up to it.
Jerry
It is now over the $4 mark and who cares how much they pay for gasoline in other countries. The States that make up the US are as big or bigger than most countrys and we have family scattered over all 50.
Dear Minnie
I am sorry that you have been having such a tough time. I think of you often.
Wonderful that you can celebrate your daughter's 16th and be there for her, your loving family, and for your OCF family.
Lots of love from Helen