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Troops!! Need your help

cph1127's picture
cph1127
Posts: 51
Joined: Jun 2011

Hi Everyone Tomorrow I start chemo at 1:30 PM. I will be given Mitomycin and 5-FU. My Doctor said the Mitomycin would take about 30 minutes to go in and the the 5-FU will start and I will continue to receive it through a pump that I will carry with me for 4 days.
My questions is: What should I expect? Will I notice anything the first night? Is there anything that I will need to look out for?
You all have such a wealth of experience and I know that I can depend on you to share. I know everyone experiences different things but.......I am a little nervous. I have been eating everything I wanted this weekend just in case nothing taste good this coming week.

When one of my sons found out that the cancer was not in my lymph node he wrote back saying,
"great news Mom, now knock that cancer in the ass" I replied "you mean out of my ass" either way it is going bye bye..... Thanks to everyone for being there for me!

mxperry220
Posts: 357
Joined: Mar 2011

When I had my chemo treatments the first time they gave me an anti anxiety infusion before the chemo as well as anti nausea infusion. Both of these helped. I had no side effects of the infusion of the chemo Mitomycin. They did not give the the 5 FU until week 4 and 6 with a pump that injected the chemo 24/7 for 4 days. The pump was a little awkward when taking a shower in that I could not get it wet. I hung it on the outside of my shower door. I did not loose my hair or have any sickness with the chemo.

The radiation caused me to have diarrhea throughout my entire treatment as well as post treatment. I used saitary pads as liners in my underwear because of leakage. I am 20 months post treatment and take 3 immodiums per day which has helped curb my mulitple bowel movements per day.

Hope this helps some.

sandysp's picture
sandysp
Posts: 743
Joined: May 2011

I won't start therapy until July 5th. Mine is T2N1 so I have some lymph involvement. Pet scan Wednesday. Good luck with your first day and the pump, etc. I had not read that part about the shower, etc. What we are going through sounds horrible but it's good to know that people can come out okay on the other side. You are in my prayers. Share everything you can as it will help me and others coming signing on. We are all at different places in our pilgrimage to regain our health.

z's picture
z
Posts: 1251
Joined: May 2009

Hello, I had my mom and friend and her toddler come over the 1st chemo day and we had pizza. It was tolerable and they do give you medicine for nausea in the iv. The oncology nurse should explain to you what all your getting. I also received a print out of what the side effects are. I only took the nausea pills one time, but the nausea was tolerable for me, yet I probably would have felt better had I taken them more. The fanny pack is like an extra apendage that has to go everywhere with you, and I would forget and get up without lifting it up. Hopefully, your week will go fast and you won't have any side effects. I wish you well, and keep us posted. Lori

melbas2
Posts: 108
Joined: Aug 2010

CPH, There are many sides of the after effects of chemo...the good bad & the ugly. Mine were the bad & ugly kind. My onc calls my her 1%..if there's 1% of something going wrong, I will experience it. Mouth sores, diarehha, nausea, hair loss, weight loss to the tunne of 30 lbs. (I was 102 when I started) Then I developed A Plastic Anemia, which cause my more barrow to eat itself. So I am almost a year post txt, and now they want to try this whole animal serum treatment all over again. If it wasn't for my granddaughter, I'd opt not to go thru it again. Hopefully you'll hear better stories than mine. good luck, Melodie

Gulamin
Posts: 132
Joined: Dec 2010

I wish you well too. I did tolerate the chemo pretty well. They also gave me the anti nausea right before and then I had some pills to continue taking at home. I followed doctors orders and it worked well. I felt ok. I could still eat anything. I forget the bag at times and got up only to notice it was there. Put it in a plastic bag and tape around it for a shower. I did not have ugly side effects and hope you will get through it ok... we are all so different. Bottomline, you will get through it. Sending you love and prayers!

cph1127's picture
cph1127
Posts: 51
Joined: Jun 2011

Thanks you everyone who posted. I knew I could count on you all :)
What an adventure we are all taking. Wish we didn't have to but you never know what is going to be thrown your way. My mother, which is 93, has always told me that God will never give you anything you can not handle. I truly believe that.

I do not know if I will be this up the rest of the time but I am sure taking advantage of it now. Smiles, Hugs and Prayers to all Cindy

sissy310
Posts: 300
Joined: May 2010

I had a little bit of anxiety and steroid medication before they gave me my chemo (and mito before that). I honestly did not have much side effects the first time...some nausea but very little. Kept on top of that. Rested a lot. Carried my little bottle with me everywhere and almost hung myself one night forgetting it was on and had it hooked over the headboard. When I went to get up to go to the potty, I was pulled back to the bed. I actually sat on the floor laughing at myself. The second round was uneventful except for a mild fever and some severe diahrrea (sp?) that put me in the hospital. The only reason I was put in hospital was the fever and possibility of dehydration.

Good for you...get that cancer OUTA there! We're all pulling for you and are here if you need to talk or have questions. Marilyne

suzynanny
Posts: 36
Joined: Jun 2011

I just finished my first week of chemo and radiation. The chemo made me so sick nauseous and diarrhea real bad. Just today feeling a little better. Already my tail (bum) is feeling the effects of radiation. I was thinking I was safe until at least second or third week. I am sure you will do well. My thoughts are with you.

cph1127's picture
cph1127
Posts: 51
Joined: Jun 2011

I am on my way to beating this "Bad Boy" I have been doing really good. I ate a pretty good dinner and made sure that I have all my meds around me. I will be taking my Zofran the first thing in the morning and then will have my compazine for backup. Dr Ballou said that should take care of any upset stomach. I did not know this but he said that the chemo does not truly upset our stomach. We have something in our brain that tells us when to throw up and that is what the chemo is messing with. Interesting. He also gave me the mouthwash incase I start to get mouth sores. So I am ready.

Nurses cleaned up my picc line and made it pretty comfortable for me. I loved the fact that I had to give 3 tubes of blood today and all she did was attach the tube to the IV thing and out my blood came. Lovin it!

One question and I do not know if I am dreaming this or not but I am having some type of sensation around my rectum. Is it possible that the chemo is starting to work already? It's weird. I start radiation tomorrow so that will be another story.

I do kinda feel like I am floating a little every now and then. I read about chemo brain but I might just be on a natural HIGH Who knows.

Thanks again for all my earthbound angels. Your the best!

Captain11
Posts: 88
Joined: Apr 2011

Hi, CPH, I can tell you what I experienced... I was given a steroid/anti-nausea med before the mitomycin injection, then went home to start my 96 hours of 5fu. I had a port. I took baths, rather than showers, and just hung my "power pack" over the side of the tub. If you got the steroid prior to your mitomycin, then you will probably be wired and can't sleep. You may feel nauseus, so take the meds, I was prescribed compazine. For me on or about the 3rd day, I started to lose my appetite, and the mouth sores/thrush/dry mouth were noticeable. Keep up with the nutrition, lots of protein: ice cream, carnation instant breakfast shakes, ensure, boost, etc. I was also given a prescription for megase, which is an appetite stimulant, to get you to eat. Whatever you do, STAY HYDRATED. You may experience bouts of diarhea, take the imodium for it as soon as it begins. Eat whatever you feel you can handle...never mind the "healthy diet" as long as you are getting protein and plenty of fluids. I mentioned in other posts that I lost 40 of my 137 pounds during my treatments. You may lose weight also. I did not go bald, but my hair was thinning in blotches all over my head. I wore a bandanna. Your butt may start to get irritated due to the radiation and chemo. Use the sitz bath for cleaning your butt, don't use t.p. to wipe. Taking a luke warm bath is good and relaxing, just don't get the water too warm or hot, because it can lower your blood pressure in a real hurry. That happened to me and I was lucky enough to be able to lay on the cold tile of my bathroom floor to help cool me down until my blood pressure was under control. As far as taste buds; the things I loved, especially tea, tasted horrible to me. But, I wolfed down chili dogs one week, then got the craving for McDonalds chicken wraps another week, then Long John Silver's fish the next, then back to the chili dogs. I craved them... 2 o'clock in the morning I had to have them. I loaded my fridge ahead of time with my "flavor of the week" as I called them..But, although my taste buds craved this stuff, I had the mouth sores, etc, so everything I ate kept drooling out as though my mouth had been shot up with novocaine. Again, if you experience that, use the biotene toothpaste and mouthwash. Gargle with the salt water or baking soda and water. That really helps. Keep drinking water to keep your mouth lubricated. Chew sugarfree gum. Biotene has some and there are specialty gums made from pure xylotol... I chew SPRY, which I get from "the Vitamin Shoppe" , a health food store. If you go outside, wear SUNSCREEN and a hat. I wore long sleeves and pants all during the summer while going through my treatments. MOST Important!!!! If you need to rest, REST!!! take a nap... let others help you with stuff around the house, etc. Keep a good attitutde... laugh a lot...and keep us posted...we each experienced different things, some of us worse than others... I wish you all the best and hopefully an easy time of the treatments. God bless. We are all praying for you.

cph1127's picture
cph1127
Posts: 51
Joined: Jun 2011

Well the first night went find. Got up this morning and was not sick but I was good and took my pill. I have eaten breakfast and my snacks and still no sickness. I do have my other meds with me just in case. My doctor had the pharmacy mix me up a mouthwash for the mouthsores. Did you have that?

Thanks again for all the encouraging stuff..it really helps to have my earthbound angels

Cindy

Captain11
Posts: 88
Joined: Apr 2011

Yeah, I had a prescription for BMX solution... and I used it, but I still liked the warm water and salt and the water-baking soda. It just seems to relax my mouth and throat better and it doesn't cost anything... I am glad that your first night went ok.. FYI, some of the nausea meds can cause you to be drowsy, so keep that in mind. I didn't have a lot of side effects right away, more as my treatments went on. The chemo can be cumulative, so you may not feel anything up front, but as the weeks go on, you may experience more weakness and fatigue. (I don't want to alarm you, just letting you know what to possibly expect.) Like I said before, we all react differently to the meds. Just keep up with the nutrition, stay hydrated, and rest when you need to. The fatigue is a drain on your body like you have never known, and no one can understand it unless they have gone through it; so, rest when you can. I wish you continued ease with your treatments. Keep us posted. God bless.

cph1127's picture
cph1127
Posts: 51
Joined: Jun 2011

How long were you on chemo? What does tx stand for? I see that alot in comments.

Thanks

Captain11
Posts: 88
Joined: Apr 2011

My radiation started in July 2009, but due to dr error, I didn't get my port until after I started radiation ,so my chemo started the 2nd week of rad. The 1st day of chemo, I got the mitomycin infusion at the cancer clinic, then went home for the 96 consecutive hours of the 5fu, then continued on radiation for 31 treatments (m - f), but mine were only about 5 minutes long. Then the 5th week, I had the same amounts of chemo. After my radiations were done, I got my pet scan in Sep 2009, which showed my cancer had spread. I had a dr with a terrible bedside manner...I got a second opinion and a different onc who has a great bedside manner. My news was not good, but, he encouraged me and gave me hope. He has had people beat this, so, I just followed his advice. I started a new chemo regimen in October/November. Cysplatin (chemo drug) with magnesium and potassium infusions along with lasix, because the cyplatin can be lethal and/or do some serious damage to the kidneys. The cysplatin was in the clinic and I went home for now 120 consecutive hours of 5fu. My treatments were supposed to be every 3 weeks, which was fine for the 1st and 2nd, but by the 3rd, my blood counts were falling, so I had to get bone marrow shots, to build up the white blood count. If the blood counts are not right, it is to dangerous to get the chemo, (infections can set in in a hurry). so, my treatments got delayed a week. After that treatment, I got weaker each time, lost more weight, and got so fatigued, I didn't have the strength to even think about eating, so I was spiraling downward. I asked the onc if he could lower my dosage and maybe spread out my treatments to at least 4 weeks, maybe even 5 weeks, because I was so weak... and it took an extra week for me to start to gain my strength before the next round zapped it out again. This chemo was really cumulative. I didn't think I was going to make it. I mentioned to the doc that if I felt this bad, how would I have the strength to fight. He agreed with me, and lowered my dosage to 4 days of 5fu and spread it out to 4 weeks, 5 if I needed it. I made it through and completed my treatments in March 2010. I have been clear since. My onc is very pleased with my results. "tx" means treatments. All of us experience different things with the chemo and radiation. keep the faith and you will be fine. Keep us posted as to your progress. We are all here for you and are praying for you. god bless

sandysp's picture
sandysp
Posts: 743
Joined: May 2011

What a story. I am so glad you have shared all this. I crave this information. Actually I am pretty terrified about starting treatment but for some reason reading your story helps me know that no matter what happens, I can share it hear and learn from you and the others. I am so glad you are better.

Captain11
Posts: 88
Joined: Apr 2011

sorry, double post

sephie's picture
sephie
Posts: 519
Joined: Apr 2009

you are wonderful. you have advised so well. i wish i could have read this before and during my tx. in 2009. i needed you. i did not do a lot of this soon enough and ended up in ICU after last tx. hugs to you sephie

z's picture
z
Posts: 1251
Joined: May 2009

It sounds like you are doing just fine. I know with me once I gotten started a lot of the unknown fears went away. That is great that the dr had the pharmacy mix you up a mouth rinse, and you should probably use it just in case. My oncologist didn't offer me anything, because he said not everyone gets the mouth sores. I would have rather been preventitive than treat them after the fact. Now as far as the sensation at your rectum, I remember having feelings there about the 3rd week in. The chemo goes after the fast dividing cells, which are the cancer cells and other of our cells that divide quickly (mouth, throat, and hair). So I suppose its possible to have a sensation. Keep us posted and I wish you well. Lori.

Gulamin
Posts: 132
Joined: Dec 2010

Good to hear you are doing so well. I had a similiar situation. I was doing ok and eating anything I wanted to. It was almost as if I was waiting for something bad to happen because it was suppose to but I went through treatment with relatively mild side effects. So, keep it up!!

cph1127's picture
cph1127
Posts: 51
Joined: Jun 2011

Day two of chemo and all is well. Ate a good dinner although was not really hungry. Still no sickness so maybe I will be ok. I am ready to get rid of this pump! It is really heavy and the fanny pack is difficult to deal with. I ended up putting everything in a backpack today at work and that seemed to help.

Had my first radiation treatment today. scheduled for 28 treatments, Monday - Friday, and they are hitting me 18 different directions. It took about 20 minutes.

All in all I feel that everything is going well and I will just take each day as it comes. I love hearing about all the advice everyone has so keep it coming. Hugs and Prayers to everyone

Cindy

Angela_K
Posts: 370
Joined: Jan 2011

Cindy:

I handled chemo pretty well both times. The mitomycin caused some itchy rashes on my chest and base of my skull about the 4th day (Friday.) By Monday I had one mouth sore. I rinsed my mouth out constantly (before and during) and it seemed to be preventative. Three weeks after ending my chemo my blood counts fell and I ran a low grade temp for a while. They had to stop radiation because of it but I welcomed the respite. I lost about 90% of my hair. About 70% after the first round of chemo and another 20% after the second. But I understand that most people don't have much hair loss. And I did lose about 30 lbs but I attribute that to my dietary changes (juicing, vegetables, low fat protein, NO sugar, NO processed foods) rather than loss of appetite.

It sounds like you are doing everything right. Taking one day, even one minute at a time, is the best way to approach treatment. If I had any immediate suggestions to you it would be to take time for spiritual and physical wellness and keep a sense of humor. Let this experience carve a path for growth for you rather than one of despair. It IS a choice.

You will get through this and I think you'll discover that on the 'other side' your life may be much richer for having had cancer. Mine sure is.

Please let me know if you have specific concerns about something you are experiencing as it comes and I can offer you suggestions at that point. There is just a whole lot of 'stuff' that goes on and EVERYone's cancer, treatment and treatment of side effects is unique to them, even though we have the same type of cancer.

Abundant blessings to you.

Angela

mp327's picture
mp327
Posts: 2848
Joined: Jan 2010

I have been gone and am trying to get caught up. I see you began your treatment on Monday and I hope that today you are feeling okay and getting that pump taken off! That will be a relief, I'm sure. I'm glad you are managing okay with nausea, etc. Please keep us posted on how things are going and have a very restful weekend!

sandysp's picture
sandysp
Posts: 743
Joined: May 2011

I am so pleased for you. I am glad you are sharing your impatience with the pump. I bet I'm going to whine and whine about everything. You have a great attitude. Just think how much progress you have made!

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