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Side effects - Cysplatin

pattyanny's picture
pattyanny
Posts: 523
Joined: Jul 2009

I am getting discouraged, and am trying to stay positive, but the side effects are worse than the TX! Has anyone had nerve damage from the chemo? Tingling down both legs 10 weeks after treatment, and hearing loss. I have learned the hearing loss is permanent, and have come to terms with it. The nerves are, quite frankly, getting on my nerves! The tingling is quick and by the time I feel it, it is gone. Something like a stun gun (I can only imagine, since I haven't had THAT experience. Lol!) It becomes more frequent in a sitting position. (Hours in front of computer, or driving) I am dealing with the dry mouth (ugh) and have turned a corner on the eating thing (Taste)since I have lost the 20 lbs I could not afford to lose. (Bad girl - refused PEG) I have not read anything on the forum on nerve damage, but am anxiously anticipating my 1st Pet Scan at Mt Sinai mid-January. Will mention it to Oncologist at that time, but Radiation MD did not want to do anything too close to my Pet Scan, so I will guess I will just keep praying, and trust in the Lord. I would appreciate any replies from you veteran survivors because I respect and admire your wisdom and strength. This discussion forum has become my safe haven. Thank you and God Bless you all in 2010. Patty

ratface's picture
ratface
Posts: 1236
Joined: Aug 2009

Hi Patty

I'm sorry for your hearing loss and tingling of the extremities. I have read that those are common side effects. My only comment is that I was on heavy doses of cisplatin and did not experience those two side effects. My biggest complaint is 'Chemo Brain" in which I just space out sometimes forgetting what I was doing for a moment. Hope the tingling diminishes.

pattyanny's picture
pattyanny
Posts: 523
Joined: Jul 2009

Hi ratface - Thanks for your timely response. I had 30 mg once a week, but do not know if that is low/high. The tingling seems more frequent lately, and I am okay as long as the severity and length of tingling do not increase since I am a "cab driver" for 2 active teens and a caregiver/deliverer for Mom, & both In-Laws. I laughed at Chemo Brain 'cause I was just calling them "senior moments"! Now you got me thinking...... lol! Yikes! Cannot wait to see what tomorrow brings, liver spots, wrinkles, arthritis???? Just happy to be around right now. Thanks for the good wishes, and may you have fewer "Chemo Brain" moments in 2010.
P.S Love your posts! :)

CajunEagle's picture
CajunEagle
Posts: 361
Joined: Oct 2009

I "got" 8 bags of Cistplatin (one every 3 weeks) plus 35 rounds of radiation. Treatment ended June of 09, and I STILL have lots of tingling in my fingers and can feel very little in the bottoms of my feet. My oncologist says, "Yea, that's my fault." "It's just one of the side effects and it'll go away." It's about to drive me nuts. Ringing in the ear is being taken care of by an audiologist in Philadelphia. He gave me medication to flood the left ear with every night for ten days. We'll see what happens. Technology has me talking with him over this huge monitor. Sorta strange and hard to get used to having that type of medical appointment.

pattyanny's picture
pattyanny
Posts: 523
Joined: Jul 2009

Thanks Cajun Eagle! The ringing in the ears is driving me nuts too! Especially during the holiday family gatherings. The noise was overwhelming at times, and I felt like people were speaking a different language, because I could not hear to process the words. I found myself "squinting" so I could hear better! Lol! I did have fluid in one ear, but took sudafed. There is some hearing loss on higher pitches. I hope your medication for the ear helps, that would be great! It must be strange, having appts over the monitor. Ahh technology! Now if they could only use their technology to end this vicious disease. God Bless You!

Hondo's picture
Hondo
Posts: 5734
Joined: Apr 2009

Ratface hit the nail on the head with the chemo brain word. I can’t remember anything anymore, it is really bad when I need to go and ask my wife if she seen me because I can’t remember where I left myself. What I do hate most is when I am preaching and forgot what I am talking about, these days I keep my sermon with me to keep me on track, anyway Jesus is there and will someday give me a new body & brain.

After treatment our bodies goes through many changes and for years to come, my last radiation & chemo was in March 2005 and I am just now having new side affects from it. One of the reasons might be because I had to have radiation twice. I am always cold and can’t get warm enough, all the vents in my office at work are plugged and I live with a space heater under my desk.

I am having nerve problems mostly in my jaw, a lot of pain and numbness, to where I can’t speak or swallow. The pain under the neck get so bad it is like a very bad Charlie horse and all I can do is hold my neck and sit sown. I tell my doctor and ENT about it but they don’t seam to know what to do about.

I am thinking about acupuncture to help the nerves Scambuster is trying it in the land down under so I am praying it works for him.

Take care Patty and I will keep you in my prayers.

Kent Cass's picture
Kent Cass
Posts: 1746
Joined: Nov 2009

pattyanny- no nerve damage with me. Did experience a week of Cranial Nerve pain, but it went away. No other nerve damage symptoms with me. Have noticed a little hearing lost in the one ear.

My Cisplatin treatment may be such that I can rightly advise you to consider that the cause of your nerve problems may be a secondary issue. Were I you, I would consider going to your regular Dr. It may or may not be related to your C. Might be a separate issue brought to light by the chemo, which is a lot for the body to deal with. The nerves on the lower torso trace to the lower spine, and an area there might be the problem. Just a suggestion.

And, Hondo- the cold feeling is with me, too. May be the thyroid, you know, but it does make this winter even colder than it is, and the summer not as hot as it is- which is a good thing.

Chemo brain: multi-tasking is my chemo brain problem. Very real. My research tells me the med community does recognize it as fact, but can't get a handle on it.

kcass

Hondo's picture
Hondo
Posts: 5734
Joined: Apr 2009

I was going through an Audit last years in my office; the auditor was getting so hot the sweat was dripping down his face. He looked at me and said why it is so hot in here; I told him sorry but I don’t feel a thing. When he looked at me I was as cool as I could be, no sweat or signs of every being hot, my 2 hour audit only lasted ½ hour. I did not have the heart to tell him I have all the A/C vents plugged and my space heater going under my desk. I have my thyroids check every 6 months last check-up was in October everything was OK then.

Take care and God bless

pattyanny's picture
pattyanny
Posts: 523
Joined: Jul 2009

Good Idea Kent! After my 1st PET, I will see a neurologist then. As for your cranial nerve pain - could you explain that? I had (in the past) severe pain in the back of my head,on both sides, behind the ears that lasted for quite a few days. Was it like that?
Thanks for you input Kent. I appreciate picking your brain! God Bless You!

Kent Cass's picture
Kent Cass
Posts: 1746
Joined: Nov 2009

My pain was a bit different: ran horizontal in left-upper cheek from my ear to about an inch away from my nose, and vertical down to my left upper-neck a couple inches below my chin. Again, I feel fortunate it went away. Couple days were kinda bad.

Believe.

kcass

pattyanny's picture
pattyanny
Posts: 523
Joined: Jul 2009

So sorry! Glad it was only a couple of days kcass, but I can imagine even 1 day it must have been bad. I know you are being modest. Mine was more of a head ache, but in the back upper neck - immobilizing! My mantra is "This to shall pass, This too shall pass....... :) Hope you are doing well, and thanks again. GBU!

pattyanny's picture
pattyanny
Posts: 523
Joined: Jul 2009

Hi Hondo, well - if I have been experiencing "Chemo Brain" - I don't remember! Hee hee!
I can't depend on my teens because they have always said to me, "oh I told you that Mom!"
I am always cold, but being 5'9 and 120lbs does not help. If I turn sideways, and stick out my tongue - I look like a zipper! :) But I am eating again, I feel I have turned a corner on the taste thing.
I am sorry to hear about your jaw and neck pain, you would think someone would have an answer. I get frustrated because I know everyone is affected differently, but someone MUST
have had a similar problem. Arghhh! Have you tried a mild muscle relaxer? I only say this because my Sis suffers with severe nerve and muscle back pain, and a little helps her.
Yes, I read Scambusters' posts too, and acupuncture sounds like a viable and promising option instead of drugs. I wish him well.
When I read how Jesus suffered and died on the cross for our sins, I am truly humbled.
I know he is preparing me to do greater things for Him on this earth.
Thank you for your wisdom & prayers Hondo. God Bless You! As always, you are in mine, as
is the rest of the "club".

ratface's picture
ratface
Posts: 1236
Joined: Aug 2009

Hondo

Same here , I'm always cold. Prior to treatment I was always the one in the room who was hot first. I have been keeping a fire going in the fireplace anytime that I'm home, really going through some wood this year. I suppose I should ask for a thyroid test. I was hoping it was this horrible Chicago winter. If I am fortunate enough to survive this long term I am going to have to move to somewhere warmer, perhaps to Louisiana?

lyolan1
Posts: 95
Joined: Jul 2009

Ratface, I lived in Louisianna for (2) summers to work in the oilfields/missisippi river while I was in college. I laugh when people in Massachusetts complain about heat. Louisiana is heat, but the nights are delightful, you wopuld love it. I would love to go back someday. The chills rreally freaked me out. I took erbitux instead of cisplatin. I also have developed a nerve issue in my hands. there is a slight tremor that i never had before. What i do not know is if it is related to my surgery to remove my lymph nodes in my neck. Evidently, there is a major nerve that got damaged. The doc says it will get better. After PT. Fight On! Alex.

Hondo's picture
Hondo
Posts: 5734
Joined: Apr 2009

It is getting too cold for me in Louisiana had to have the space heater running on me all day at work, I hear south Texas is not to bad or may Mexico, will need to brush up on Spanish. The last time I spoke Spanish I was trying to order two eggs over easy, that was not what came on the plate.

Take care my friend and my the Lord bless you always

Hondo's picture
Hondo
Posts: 5734
Joined: Apr 2009

You are so right when I think of all that Jesus did for me how can I complain about the little problems I have to bare. I look forward to that day when I will see my savoir and friend who has carried me through all my trials when I could not walk by my self.

Take care and may the light of His love shine on you always

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