If anyone is familiar with cisplatin I wanted to know if nausea was a serous problem and if so did the nausea drugs work. Also did anyone loose their hair due to cisplatin? Thank you, Angel

Lots of folks here had Cisplatin. As with most chemo, nausea is a potential side effect. However, I personally did not have any nausea from the treatment, likely due to the anti-nausea medication.

The only hair I lost (besides my beard and neck hair due to radiation) was at the back of my head at the neckline. Whether this was radiation or Cisplatin, I couldn't say, but believe it was radiation. It was not very noticeable anyway, and grew back quickly. To my knowledge, substantial hair loss is not customarily associated with Cisplatin treatment.

Hi Angel,

I had weekly cisplatin during my treatment and yes, I had trouble for the first couple of weeks with nausea. It generally hit about the second or third day and although I didn't vomit it made eating tough. After the third week, I got a different combination of anti-nausea drugs and I didn't have any further trouble with it. The other significant side effect for me was a terrible metallic taste in my mouth that made food taste really terrible. One way to combat that was to use plastic utensils but like the nausea, it did impact my ability to eat normally.

As far as hair loss, cisplatin shouldn't cause hair loss - it works differently than the drugs that do cause hair loss. That said, like Jeff, I lost hair at the back of my neck from the radiation and I also experienced some thinning overall. Not really noticeable to most people, but I notice it. I don't think anything has grown back yet, but its only been a couple of months.

- Margaret

Jeff and Margaret, Thanks for the info. The 2 med's given to me for nausea are Emend (3 pills costs $350.00) take the day of treatment, 2 day after and 3rd day after chemo, and I also have phenegrin that can be used with the Emend. All I can say is I hope medicare drug coverage pays for it, if not maybe they can change it. That is a little expensive for 3 pills. Angel

Angels,

During your chemo infusions, you will also get bags of drugs other than the Cisplatin...some to help you hydrate, some to offset toxicity to your kidneys, some for nausea.....Bill would go thru 10 bags of solution during each weekly (approx. 6 hour) infusion. The first one was usually benedryl (sp?) so he would be nodding off to la la land very quickly.

Make those chemo nurses your friends...they are usually a special bunch. I know we became fond of them and sometimes they intervened when no one else would.

Sending strength and positive vibes your way as you begin treatment.

Deb

Debandbill, Thank you for the inspiring information. I hope they give me the benedryl first 2 so I can sleep through it. lol, It seems that everyone I have encountered so far has been very nice to me and I really do appreciate everyone here as well. All of you are very special people. Angel

Angels,

I struggled with nausea quite a bit until I got my anti nausea meds in order. I too had emend and that worked on the days I took it, but I also had Zofran ODT. That worked best for me, after I couldn't swallow that well. It's a small tablet that went under my tongue and disolved. I could also mix it with a little water and put it down my PEG tube. I also had daily IV fluids and I'm sure that helped.

My hair loss was mainly due to radiation treatment.

Stay hydrated, make your self swallow even when it hurts the worst, gargle 4 to 5 times daily with baking soda, salt and warm water to keep your mouth clean and stay as active and positive as you can.

Tom

Angels,
I didn't have Chemo, but my last week of RT I had a really bad bout with nausea and was given liquid Zofran (Ondansetron Hydrochloride Oral Solution).

It worked great.

Stoj, I found out my drug coverage didn't cover the Emend so I will have to wait and see what the Dr. replaces it with. Thank you for all the good advice.I hadn't heard about the soda and salt water so I was glad to hear about that. Even now I have trouble swallowing so I am still on a soft/liquid diet. Good info, Thanks, Angel

DonB, I keep reminding mysel that this is only for 7 weeks and then I will be on the road to recovery. I will be glad when I get this dental problem cleared up so I can get this done asap. Thanks a lot, Angel

i had cisplatin given to me daily on weeks 1 ,4, and 7 of radiation monday thru friday i got zofran with it and i didnt have a bit of nausea i havent read of any one else getting it daily like i did.

Angels,
I forgot to mention that Bill had a Cisplatin/Taxol combination and although his hair thinned, he kept most of it and never looked "bald."

Also, he really never had nausea. The worst for him weirdly enough was hiccups...starting the day after treatment and going for a day or two and they were awful. The MO prescribed a couple of things that kept it at bay. Both your RO and your MO's office can help you with symptoms that arise...don't hesitate to call them or mention it at your appointments. Many times they will have samples to give you at no charge...I know we got several things...one for nausea that we never had to use.

Do you have someone to drive you to appointments?? You won't need it at first, but later in treatment, you will feel pretty lousy and really it won't be very safe for you to drive. Get this arranged now before it becomes necessary. The American Cancer Society has a program to drive patients to treatments if you get to that point.

Hugs, Deb

How often will you get the cisplatin? Back in the day (2 years ago) most of us got 3 large doses and now many are getting smaller weekly doses which have lessened the adverse side effects like nausea and hearing loss. To me the delivery is more important than the type of chemo so check this out.

I haven't read all the posts before me but the hair loss on the back of 6the neck is due to the exit radiation, not Cis.

You also might want to inquire about Carboplatin.

Deb, I heard about the Am. C. Soc. and I contacted them. But they can't hardly find people willing to carry people very much. They told me they could help but could only offer 2 days per week next week if all goes well on the dentist appt so I can start my radiation treatments. Any other transportation you know of? Thanks Angel

David, I am supposed to receive cisplatin once a week for the duration of the radiation treatments which will be for 35 treatments (7 weeks). I am glad to hear that on the hair. Mine is very long and I have a lot of it so if I was going to loose it I had planned to just cut it and donate it. Thanks, Angel

Angel-You should check and see if your town or county has transportation available for doctor appointments. Our town runs a van but it's only available a few days a week. As for the Cisplatin, Neil had the smaller doses once a week for 7 weeks. He had it concurrent with the radiation. He did not lose any hair or hearing. He was nauseus in the beginning but the meds they gave him worked for the most part. It was hard to say what the worst side effect was because the radiation made him feel so horrible we weren't sure what side effects was what. The exhaustion was the worst part in terms of getting on with daily life. Good Luck!

Sue

Angel,
Also check at the Cancer Center. I was told that the one I went to was able to provide local transport when necessary.

Sue and Don, Thank you for the ideas. I have someone checking on the van but they said because I have medicare and not medicaid I don't qualify. I bought a van but since they told me I would be taking chemo, I dought I will be able to drive myself. I'll just have to play it by ear day by day. Thanks, Angel

Angel,

If your nausea is kept under control, you should be OK to drive for at least three weeks....but then...all bets are off. Some posters here were able to take themselves to treatment OK...some did but should not have...and I know that my Bill was not competent to drive the last two weeks of treatment.

Keep calling various agencies...I'm sure the gas crisis has dampened the volunteers, but maybe churches or retirement groups might be of help. Also maybe the local SPOHNC organization would have someone that would sign on for a couple of weeks. Like I said, ask those chemo nurses...they have a lot of contact with patients every day and probably discuss transportation issues as well...they might be able to put you in contact with someone.


Good luck. Deb

The antiemetic drugs are really expensive. When I was taking Zofran it was $35 a tablet (Emend is a newer, similar drug). They are both in the SSRI family of drugs and literally switch off the nausea center in the brain. It only works about 60% of the time and should not be used longer than a week at a time since it will lose it's effectiveness.

Some of the less expensive drugs are Compazine and Ativan. Compazine also comes in a suppository form which is very handy if you can't keep anything down.

Sometimes they will add Reglan into the mix (to keep things moving though your system).

Cisplatin is not only tough on the kidneys but also causes mouth sores and does a number on the stomach. I was also prescribed industrial strength antiacids (Pepcid, etc.). It is absolutely critical that you stay hydrated during your entire treatment adventure. If you throw up, you must replace the fluids you lost. Keep a daily journal of your water and calory intake.

Everyone responds differently to treatment - some have responded very well to anti nausea drugs.

When you start getting into the pain meds you WILL have constipation problems and they can be quite severe. Speak with your nutritionist about countermeasures.

The advice that I got at the time was to have a full stomach before infusion and eat snacks during infusion. Most infusion centers will provide them. I didn't find the infusion thing to be so bad, like others have said they typically have very special and compassionate nurses in the infusion unit. It's also the best place to get rehydrated (rather then go to emergency). Most of the chairs had TV's, I brought an iPod and listened to music and/or read. Ask for a heating pad for your arm with the IV - it will make it a lot more comfortable.

About hair loss. Cisplatin isn't the worst chemo drug for this side effect - you will lose some hair. Radiation will permanently kill the hair follicles directly in the beam field. So for men, we never have to shave below our chin again. I am assuming an oropharyngeal cancer.

Your local ACS should be able to provide you with drivers. If you have to drive more than 60 miles RT to Tx, they will also pay you a small mileage allowance (not to exceed $200 - if someone is driving you)

Hi Angel,

I was able to drive myself to radiotherapy everyday except for the days that I was receiving chemotherapy too. The cancer centre here insisted that I use the transport that the hospital provided for those days when I was receiving both treatments, and I'm glad I did.

I thought I would have to get assistance during the last couple of weeks of radiotherapy only days but I didn't. Having said that I had transport organised just in case.

I had Cisplatin 1 day per week for 6 weeks without any problems. The anti nausea medication they provided certainly helped me there. Besides my hair thinning a little I had no other obvious side effects from the chemo.

Take Care - Karen

Gary, I have just a little patch of hair still growing on the tip of my Adam's Apple!

Pete, I have the same thing, It's due to the shielding they use to protect the thyroid.

Gary, Karen, Pete, and Jeff, Thank you faor the info very much. All of it really means a lot to me. Angel

That explains those rogue hairs on my Adam's apple! But they did spare my thyroid...

So far, my thyroid hasn't been affected to a degree that's noticeable, but I already had a flaky thyroid...