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Cisplatins side effects

vermontgirl's picture
vermontgirl
Posts: 66
Joined: Nov 2012

Hi everyone!

We are officially on the bus. They changed the plan for us and have decided against 3 high dose cisplatin in favor of 7 weekly low dose cisplatin. My husband has always had hearing loss and ringing in one ear since he was nine. They didn't want to risk it with high doses they couldn't take back or change course as easily. So....yesterday he got got his first dose. At 1am he felt like his thumb and two fingers were numb and he had lost grip strength. In the morning, it was totally normal. We told the RN at his rad appt. They will just watch him to see what develops. I know peripheral neuropathy is a potential side effect but it was only on one hand....not tingly, hot or both hands. Has anyone had experience like this?

Thanks guys,

Kirsten

phrannie51's picture
phrannie51
Posts: 3741
Joined: Mar 2012

Tingling in figertips...as I had more Cisplatin it stayed longer. By the last trestment it never went away and I still have 4 months out. I did have 6 large doses tho. The small doses may be the ticket for the neuropathy to be transient.

ToBeGolden's picture
ToBeGolden
Posts: 697
Joined: Aug 2010

It's good to get onto that treatment road (when treatment is necessary). I know that loud sounds can interact with some medications to produce hearing loss. So I would stay away from vacuum cleaners, leaf blowers and the like. Avoidance can't hurt. (Or am I just generating excuses for getting out of chores.) I had little trouble with my cisplatin-lite. Rick.

longtermsurvivor's picture
longtermsurvivor
Posts: 1804
Joined: Mar 2010

it wasn't related to the cisplatinum. Very fine to see what happens, but I wouldn't worry about this as a platinol side effect.

Pat

vermontgirl's picture
vermontgirl
Posts: 66
Joined: Nov 2012

Thanks Phrannie, Rick, and Pat. I was thinking that it was more likely that he slept on that arm funny since it was only his one hand that was affected. And it has not come back since last night. We'll see if his next chemo on the 26 brings the same problem.....hope not. My husband wants to try to drive (me drive him) home on the weekends which is a 4 hour drive in good weather. I was thinking for 2-3 weekends yes but that probably it wouldn't be a good idea to be that far away from his MDs after that. Any thoughts?

Kirsten

vermontgirl's picture
vermontgirl
Posts: 66
Joined: Nov 2012

Thanks Phrannie, Rick, and Pat. I was thinking that it was more likely that he slept on that arm funny since it was only his one hand that was affected. And it has not come back since last night. We'll see if his next chemo on the 26 brings the same problem.....hope not. My husband wants to try to drive (me drive him) home on the weekends which is a 4 hour drive in good weather. I was thinking for 2-3 weekends yes but that probably it wouldn't be a good idea to be that far away from his MDs after that. Any thoughts?

Kirsten

longtermsurvivor's picture
longtermsurvivor
Posts: 1804
Joined: Mar 2010

To be honest with you, we did a drive like this. Six plus hours, each way. If I hadn't been doing well that would have been different. But doing well, we decided to drive.

Pat

NJShore's picture
NJShore
Posts: 411
Joined: Nov 2012

Kirsten,

We are just short of two hours away from home, we commuted the first week and now are stating in the city of treatment because of swelling in the throat and nosebleeds from the car vibrations. So, as long as you have good roads and great shocks and full air in the tires, you might be good to go home. However, the partial packing, and unpacking, and traveling exhausted me, my husband was fine with it, but it takes a toll.

Remember to take care of yourself too.

Kari

phrannie51's picture
phrannie51
Posts: 3741
Joined: Mar 2012

a time or two, he won't want to do it anymore? Driving back and forth sounds exhausting to me...and then there's the matter of the weather which can take some serious changes in a 4 hour drive. All I can tell you is that I was so grateful I stayed here for treatment, and didn't have to make any trips to be treated.

p

RushFan's picture
RushFan
Posts: 218
Joined: Aug 2010

First of all, best of luck to you and your husband.

I had the same Cisplatin plan.
7 weekly treatments, every Monday. A lovely way to start the week.

So, I completed my treatments over 2 1/2 years ago. Along with the chemo, I had IMRT, Monday -Friday for 7 weeks...the full complement. I had unknown primary, so I was radiated left to right and up and down and all around.

And here's my experience in a nutshell:

It was very rough, but by the looks of your husbands picture...he can do this. Period.
I was 49 yrs. old in good shape. I did not want a feeding tube, and made it without it.

Pain management is the key as well as caloric intake. Ensure & Boost were my friends.

There's much more to share, if you have any questions...let me know. The folks here will provide piles of info for you. I rarely log on anymore.

I have been NED every scan. At my last scan my doctor at M.D. Anderson said goodbye...I no longer need to be scanned. As she put it..."at this point, the likelyhood of recurrence for your cancer is extremely rare". I'm now survivor status.

I consider myself extremely fortunate to be basically "back to normal" again. Any issues I have are so minor, they are part of the new normal.

My salivary function is at 90% of normal. My taste is 99% of normal. I have gained 30 pounds...10 lbs. off my starting weight. I take levothyroxin for my thyroid every morning. My ears used to ring from many live music shows, and they ring even more now. If they stopped ringing I would freak out. I've been accustomed to the ring tones... I don't need to shave under my chin or below jaw bone line. My hairline in back of my head is goofy. My jaws still get tight. My neck cramps now and then. I'm dry at night, but still use spray.

Hang in there and fight hard. Family, friends and faith carried me through that difficult time in my life.

Best regards and Merry Christmas,
Chuck

luv4lacrosse's picture
luv4lacrosse
Posts: 1392
Joined: Jul 2010

I took the 3 high doses and have 50% hearing loss in my right ear, and bad tinnitus, but you get used to it. I think getting it in smaller but more doses is good, as the drug does work.

Tuff it out and you will not regret it.

Mike

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