By now it is clear to me that some of the chemotherapy has roots in alchemy and black arts. MO's tend to use what they know and what has worked for them.
Frankly, there are really not many new options available, other than Erbitux. Given, that there are just a few drugs commonly used (cisplatin, carboplatin, 5FU, taxodere and the like) is is amazing how confusing this still is. Part of this is clearly dictated by the patients health etc. but a lot seems arbitrary and difficult to penetrate.

For instance you are told that either carboplatin or cisplating can be used.... and then well I am more comfortable with cisplatin. So what are you going to choose in that case?

During IMRT I will have weekly cisplatin (6 times total). After that the idea is to go to a full regimen cisplatin (3x).
The weekly dosage is roughly 1/3 rd of the dosage per shot compared to one shot if you do this 3 times only. Given the clearance rate it would seem that you get a higher bio availability if you give a lower dosage more frequenly.
I am amazed that this sort of stuff is not know, especially for a drug as ancient as cisplatin!!
Does anyone have any experience with weekly cisplatin and did anyone do this for an extended period of time in place of the regular 3x regimen?

Thanks for any insight here.

Hey Markus

I had the three Cis, 5FU, and Tax, 3 treatments, wearing the 5FU all week. The treatments were 3 weeks apart. This was done to shrink the tumor before surgery, It worked. VERY minor nausea or any other side effects.

Also I had Erbutux during IMRT (after surgery).

Clean CT and PET, so far I am pleased!

Kevin

Markus,

I had two Cisplatin treatments, my hearing got weird, was switched to weekly Carboplatin and Taxodere. Regained my hearing, lost my hair.

I found the Cisplatin to be a pain in that urine output must be measured and charted, at least in my case that is what they had me doing. Not more than a little nausea.

Pay particular attention to any change in your hearing. Most changes are permanent, and deafness is a possibility.

Joanna and Kevin
do you recall what the dosage was they gave you, they do this by mg/m2 (milligram per square meter)
A regular dose is 90-100mg/m2, while the weely dose is around 30-40mg/m2

Kevin it looks like you got everything and the kitchen sink!

Thanks!

Markus,

I had the regular, full dose, dispensed over a period of several hours, after the extra hydration and benedryl had been run into me. Even at the lower, weekly dose, I would imagine that hydration will still be an important issue.

Just a note to say that I believe absolutely that chemo is a very important part of the treatment. I had a large tumor with involved lymph nodes, and am healthy and happy five years later. When I was treated, there was no certainty that chemo was as effective as it is now known to be. Further, there was no option for the weekly treatments you will be receiving, which I think makes a lot of sense. As you may be the first person here to receive that form of chemo, I hope you will post to let us know how this affects you. Changes in treatment are being made all the time, and this may be an important one.

Good luck!

Markus,
I am in the UK and had surgery follwed by six weeks of radiotherapy (30 sessions), along with weekly cisplatin - each Thursday, taking about 6 hours to complete, largely because of the fluids used before and after the bag of cisplatin. I'm sorry that I can't tell you the dosage - it took about two hours to go through the line in my hand. I was given anti-nausea meds before and aferwards and in my case, there were no adverse side effects, (other than, whisper it, a little constipation!) - that I have become a person who says such things to strangers!!
I really don't know whether this is standard over here, but there were other H&N patients receiving weekly cisplatin at the same time. I was told that it works to improve the efficacy of the radiotherapy and would also act as a general 'flush'.
Sorry if this is a bit wishy washy and vague.
Good luck,
Georgia

Marcus;
No matter how you recieve it, stay in touch with your hearing. As Joanna mentions, if hearing gets "weird" start talking to your Dr.'s, and hopefully it's not too late to react if need be. It seems as though unless a patient is switched off Cisplatin early during treatment when hearing problems occur, once the hearing loss starts it's like trying to stop a freight train. My hearing issues did not arise until early in the second dose. My tubes had shrunk and were filled with fluid, presumably from the radiation, so they went forward with my final dose of cisplatin, thnking that the hearing would come back following treatment. As far as other physical reactions, I think the radiation had more to do with them than the chemo.
On a brighter note, I may not be hearing as well but I'm still breathing and smiling....

Best wishes,
Steve

I had one dose of Cisplatin w/ very little nausea but I did have ear problems. They were -ringing & roaring so bad for a couple of weeks-and some noises were very load. The OC switched me to Carboplatin on my second & final dose. That caused no problems. My hearing is pretty much back to normal w/ minor ringing-I'm pretty use to it.

The CCC I am going to provides a choice between the full dose Cisplatin and weekly dosages. Tomorrow will be Cisplatin treatment 5 of 7 for me.

It usually takes about 3 to 4 hours to complete the whole process -- insert the IV, draw blood, get the results back, run some hydration, take Decadron and Zofran pills, take the Cisplatin. I also have daily Amifostine for my radiation.

So far, no hearing issues, minimal to zero nausea, some fatigue, no sense of taste. So far, so good.

Hey Markus

No I do not remember the dosages. I got the Cis and Tax on the Monday of the week I was "on the bag". Slept alot and didn't go to work during that week.

You're right, they thru it all at me.

KC

what is the amifostene for? I didn't recieve that.

Thanks
please keep the info comming in.... perhaps it will make sense eventually.

Jordan re amifostene (ethyol): Check it out on wikipedia (This is an excellent source for a lot of these things). Briefly (from the literature): It is a chemoprotectant. It is used to decrease the toxicity of cisplatin. (kidneys). Also it reduces the incidence xerostomia.
It does however also have side effects on its own. .... And it "may" also protect tumor cells, but I do not know if ther is credible evidence for this. After discussing this with the RO we decided not to use it.

Please do not use Wikipedia as a resource for anything that affects your well being. By their own defiition:

Welcome to Wikipedia, the free encyclopedia THAT ANYONE CAN EDIT. I am particularly disturbed the word anyone, which means someone who has no clue, an agenda, misinformation passed on to them by their grandmother, or whatever.

Go into the ethyol section and type in that it is purple, or green or whatever.... you have just changed what people coming behind you are going to read. The oversight on all this is highly variable. You want to research something that does not involve your health on it...have at it.

Access the newest news about amifostine on the OCF news site and elsewhere by using the OCF search engine. (Please spell it right with an i....) the OCF site is vetted by the doctors on our board and more. Or go to the NCI site. Information is only as good as the source of the information.

Brian,
I fully agree re wikipedia, it is not a definite resource. I also neglected to point to the selected info that is available via OCF search, which was unintentional and I appologize, it seems silly not to take advantage of it.

Markus

Jordan

The amifostene was a shot to try and protect the saliva glands from the IMRT. I was told it was a 50/50 shot that it would work.

Kevin

Hi Markus,

My husband had 8 weekly treatments of Cisplatin.
They did administer about 800-1000cc of saline prior to and following each treatment to keep him hydrated,as well as him drinking plenty of fluids the next couple of days.
They also administered anti nausea meds along with the "pre" chemo saline bag. They put in magnesium in the post therapy saline bag.(helps to maintain kidney function) His chemo days lasted about 7 hrs.
His weekly Cisplatin doseage was 10mg.
He had no problems with hearing, hair loss, or nausea.
The oncologist recommended doing the 8 weekly treatments because he said some patients aren't able to tolerate the Cisplatin X3. He said some aren't feeling well enough to finish that last one.
We are almost 8 weeks post treatment now.
His taste buds are pretty good now and he eats pretty well and we are looking forward to getting rid of his PEG in a few weeks.
I hope you are doing well.
Vicki

First of all thanks for the info:
This is with respect to frequent, low concentration cisplating use during RT. Results depend on individuals, drug concentration, duration etc. All of these factors are important and accurate info is difficult to obtain. So your milage may vary....

I have had two weekly low dosage cisplatin (30mg/m2) which was tolerated very well. Nausea was not an issue AT AL until day 6 after treatment and then only in the morning. (I did not take any additional anti nausea medicine).
However, 3 days after the initial infusion I got a slight ringing, by the time for the second infusion is was mostly gone (either that or I got used to it). After the second infusion it got worse (still quite tolerable). Nevertheless, we switched to carboplatin...... see also the beginning of the thread.
Once done with the RT I will summarize my experience.

Markus