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Not having such a good time!!!! any suggestions?

Donna70's picture
Donna70
Posts: 920
Joined: Aug 2009

Hi,
Well Mike did good except for the separated rib which is no ball in the park. This is my status report: Had diarrhea and had to have IV infusion on Wed. All tissue in my mouth is ulcerated including lips which you can actually see, can hardly eat but trying. Diarrhea stopped Thursday, came back Thursday night, woke up and told my husband that my heart just did something funny. We did not think of going to the hospital. Got up Friday morning and started almost passing out when I moved. Called hubby to come get me to an ER. When they plugged in the monitors and EKG, nurse ran out of room shouting for drs to come. Crash cart etc. Ron remained amazingly calm. 193 heart rate, atrial fib. This is ironic, typed cardiac reports 15 yrs but when your heart is going that fast you can't tell what is happening, also does not make you think logically like call 911 or go to the ER. So if your heart does a thumping, maybe get help. So they got it slowed down and after 8 hrs in Er got to go home with the dr suggesting I get a stress test, don't think so, already had it, it is called cancer. They gave me famvir for the ulcers but it also causes diarrhea, in fact all the meds they gave me cause weakness, dizziness and diarrhea? So if you know of any salves etc for the mouth ulcers tell me please. I can get cream of wheat down very diluted, ice cream and some milkshakes but afraid the milk adds to the diarrhea but I am trying. I am on a different chemo protocol then Mike, cisplatin and that good old 5 FU. Will be seeing the chemo dr on Monday and asking a lot of questions. I admire all of you guys so much but have many bad thoughts because this is how I spent my 1st 2 wks do not have radiation side effects yet.
thanks for listening.
Donna70

JaneE2366's picture
JaneE2366
Posts: 332
Joined: Jul 2009

Hi Donna,
When my husband Charlie had his first round of chemo he experienced the same side effects. He came home for the hospital barely able to talk and not able to eat. He felt the same way...didn't want to drink anything that remotely looked like it had dairy in it for fear it would make the diarrhea worse. So he basically lived on cream of wheat. We were given Nystatin for his mouth sores. You are suppose to swish and swallow it. Well that made his stomach even worse. Afterwards we were told we could have such swished it and spit it out...it would have helped with the discomfort. We were also given Caphosol..another mouth rinse...and that helped...the down side was it was expensive...but it was worth it. In fact whenever Charlie would go in for another round of chemo, we would start rinsing with the Caphosol right away hoping to prevent the mouth sores. He never got them as bad again...but of course the dr lowered the dose of the chemo and I am sure that had a lot to do with it.
Charlie's next 3 rounds of chemo were not as bad as the first...guess they just had to get the right "cocktail" mix. So stay strong and our prayers are with you.
Jane

Donna70's picture
Donna70
Posts: 920
Joined: Aug 2009

Hi Jane,
thanks so much. I have Nystatin here, when my 1st EGD was done they thought I had some kind of fungus? or something in my esophagus and still have lots of it. The Famvir they gave me is supposed to suppress the ulcers and the nurse said it will even prevent them from my next round if I stay on a maintenance dose, but I am writing down that Caphasol and asking the dr about it, is it prescription? With all that has happened would not be surprised if the chemo dr does not lower my doses. He said he thought I could only take so much Cisplatin but think some of this is the 5 FU. How is Charlie doing? thanks again,
Donna70

JaneE2366's picture
JaneE2366
Posts: 332
Joined: Jul 2009

Hi Donna,
Charlie did have Thrush....which I understand is a fungus. I think the Nystatin really helped it but he just had to stop taking it....but if we had known it would have been beneficial to just swish and spit the Nystatin, we would have tried that. I think it helped to numb the mouth. The Caphasol is a script....and it says it is an artificial saliva....but I know it helped Charlie a lot.
Charlie is doing well...thanks for asking. He did 4 rounds of chemo (120 hrs of continuous 5-FU, Cisplatin, and Taxotere.) Last round was in July. After 2nd round of chemo he had a PET Scan and he is in remission. So they decided to do 4 rounds of chemo instead of 6. In August he started taking Xeloda....5-FU in pill form. Hoping that keeps him in remission. He is in the middle of his second round of Xeloda now and other than being very tired, he is OK. Monday we have another PET scan to see if he is still in remission. Pray that he is.
Continuted prays for you...and stay strong.
Jane

mumphy's picture
mumphy
Posts: 486
Joined: Jun 2009

When Al had his mouth sores the Dr. Rx a compond called Magic Swizzle it is basically
lidocain, benadryl and maloxx. They had him dap it on his lips and swish and spit he could
even gargle with it but wasn't supposed to swollow it. I help alot! I isn't very expensive
and he was able to eat better after a few days. We even kept in the fridge to keep it cool
that made if feel better also.

I hope this helps, it sure can't hurt.

I also would like to ask if they had you do a stress test before starting chemo? That was
one of the test they had Al do before starting, because some of the chemo meds can cause
cardiac events, even with that after his 2nd treatment he had to have his chemo changed because he had a similar event about 20 minutes after his treatment and they had to keep him in the hospital for a few days.

Stay well!
God Bless
Kath

Donna70's picture
Donna70
Posts: 920
Joined: Aug 2009

Hi Jane,
I will say special prayers for Charlie that the scan is clear!!!! they are always scary events. hope all goes well on that front!! take care,
Donna70

Donna70's picture
Donna70
Posts: 920
Joined: Aug 2009

Hi,
Want to thank you all for the ideas. I have the magic mouthwash but the lidocaine feels like acid, can't get a toothbrush in my mouth because it is so sore so I rinse with Biotene alot and using the Nystatin. The diarrhea has let up for now. The atrial fib is scaring me, had a bad episode last night and did not want to go back to the hospital. I am on Metoprolol for that but it doesn't seem to slow my heart down enough. I had a complete cardiac workup before my first EGD including a stress Thallium. So I am trying, hoping that the chemo dr tomorrow can tell me what to do, I hate running around with the little energy I have and found out atrial fib can cause strokes which scares the bejammers out of me. My mom and brother both died in nursing homes from the effects of multiple strokes. I watched that movie The Curious Life of Benjamin Button when I got home from the hospital on Friday and it had this beautiful line in it: "To make the best of the worst". Think we are all trying so hard to do this, esp Kitten and soldier on. My friend with lung cancer got me this book, "A Place Called Hope" and it has much in it that inspires you. The author struggled and survived 15 yrs of breast cancer. So onward we go. thanks again,
Donna70

Donna70's picture
Donna70
Posts: 920
Joined: Aug 2009

The book I mentioned is actually titled, There is No Place Like Hope by Vickie Girard. sorry!!
Donna70

mumphy's picture
mumphy
Posts: 486
Joined: Jun 2009

Hi Donna,

I read that you see your Dr. tomarrow and thats good. The A-fib is very scary, I know I don't have A-fib but I get used to get these episodes of fast heart rates that they really
haven't diagnosed. It's part stress and I also have a high heart rate to start is is very
scary.

Any way I know that you know how serious that it can be.

They may have to switch your chemo or lower it and thats O.K. its better then getting a clot from it.

Please take care.

GOD BLESS
KATH

Donna70's picture
Donna70
Posts: 920
Joined: Aug 2009

Hi Kath,
I have a fast heart rate too but I actually was in bed at the time trying to sleep and had it last night again when I went to bed??? I am on a pretty large dose of Metoprolol and boy do I have questions aplenty for the drs. I am petrified of strokes because of my family history so I will do what they tell me to do. thanks!!!
Donna70

MOE58's picture
MOE58
Posts: 649
Joined: May 2009

Donna,

Jeff was also on the lydacane malox and the other they told you about on this site it worked really well also just plain old orajel mouthwash works well too it did for jeff, Famvir is excellent meds also, I wish you luck we have been there and done just want to tell you it does get better

Lori

emg09
Posts: 252
Joined: Mar 2009

Hi Donna,

My dad was on FOLFOX during his original treatment, 5 FU is part of that cocktail. His diarrhea was HORRIBLE!!! The Dr. put him on tincture of opium. That really helped him, however it was EXPENSIVE!! It was hard to figure out the right amount to give him. I suggested using wipes to help with the pain he was having down there as well. Hang in there, I hope things improve and I'm sorry to hear about your heart scare!! Take care and God bless!!

Erika

Donna70's picture
Donna70
Posts: 920
Joined: Aug 2009

Hi Erika,
thanks for the advice. They did give me a rx for lomotil but luckily the diarrhea has stopped for now. Sorry about your Dad, it just debilitates the heck out of you. The dr wanted to give me Ivs yesterday and I refused, dumb move, getting them today. Just can't get enough fluids in my body to maintain a balance. The dr said the chemo did not cause the afib so off to the cardiologist I go. I go back in the hospital on 10/5 for my last chemo cycle and then will have 6 wks off to rest and build my body back. Erika somebody just told me about the tincture of opium, never heard of that before. thanks again, take care,
Donna70

WildGoose7's picture
WildGoose7
Posts: 34
Joined: Aug 2009

Donna

I'm finishing my second week of 5FU and I have the exact opposite problem. I just bought a big jug of prune juice and I don't have a blockage. Nothing but liquids in = nothing but liquids out.

Just take care of yourself and you are in my prayers.

Mike

Donna70's picture
Donna70
Posts: 920
Joined: Aug 2009

Hi Mike,
That stuff did constipate me in the hospital and had to take meds while there then I thought it was happening again and took a dulcolax and that is when the runs started. It has finally let up but I had it the night my heart decided to go nuts. Boy I don't understand how your chemo protocol works, mine is cisplatin and 96 hrs of 5 FU inpatient with radiation, then go home more radiation and go back in at 4th wk and more cisplatin and 5FU, continue radiation till I have had 5.5 wks of radiation. My six wk layoff will be spent with side effects from last chemo and maybe 3 wks of rest. Oh boy is Thanksgiving going to be fun this year, figured out I probably won't be eating any semi normal food till sometime January. Mike have you lost weight I lost 8 pounds so far. Did you get mouth sores and any radiation pain? They just gave me elixir of Lortab because I am getting pain in my radiation area and esophagus. stay strong all of you are in my prayers!!
Donna70

MOE58's picture
MOE58
Posts: 649
Joined: May 2009

Donna

What did the doctor say about your mouth sores, and what did he prescribe you. You might try Milk of Magnesia if you have problems again, you sound like you are having the same effects my husband did, Unless you have surgery before Thanksgiving you might get to eat some, and if not you can do baby bites, but at least you are alive and breathing. You can fight this ugly disease, look at our sweet Kitten, if she can you can too. Jeff lost weight too he weight 285lbs at time of diagnosis and now weighs 234lbs went from a size 44 pants to a size 38 so he has lost a lot of weight, he is just now getting his strength back. You will get weaker before you get stronger.

Oh by the way don't forget to be looking for your big girl panties, shiped federal faith express with a blessing from the marshall's

Keep in touch
Lori aka Moe

MOE58's picture
MOE58
Posts: 649
Joined: May 2009

Mike

Do you just get to have liquids only? if so why? I had been thinking of you today, and was going to send you a post stating its time to check in, thats the rule you have to check in at least once a week so we know you are alive. Sorry you are having trouble, hubby had the same problem and milk of magnesia works great he said. You know everybody is different on chemo, be preared to loose weight he has went from a size 44 pants to a 38 so thats how big of a guy he was.

Take care and keep us posted

Lori

ps don't forget your Big Boy Underwear when William sends them through Faith Federal Express

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