Please advice if any one knows what would be the best option.Today the doctor adviced they will give full blast radiation. Options with radiation are either 3 cisplatin or 3 Panitumumab study drug. What our concern is that chemo is tested but this new drug is also very promising.
We have to make a decision by tomorrow morning as the Treatment is to start on Nov 1.
This is how it works;
standard fractionation radiotherapy once daily, 5 days a week, for 7 weeks. Patients receive cisplatin IV over 1 hour on days 1, 22, and 43 of radiotherapy.
accelerated fractionation radiotherapy once daily, 5 days a week, for 6 weeks. Patients receive panitumumab IV over 30-90 minutes 1 week prior to and on days 15 and 36 of radiotherapy.
Thanks !
Im familiar with cisplatin but not with Panitumumab. Ive never even heard of the other drug. That does not mean it isnt good or it wouldnt work. I was given cisplatin the way you mentioned above. My third round of it was cancelled due to being so ill. Dont know if it was from the chemo or just radiation getting the best of me. Without knowing anything about the other drug it would be impossible to give any type of opinion. Thats all anyone here could give anyway is their opinion. The difficult choice is completely up to you and your family to discuss and decide upon.
Im sorry I wasnt able to assist you.
Hi Roma
This is so difficult for you to have to make this choice.
Alex and I also had the choice between drug A (not panitumubab but something else in that class) or cisplatin. It does frustrate me that the professionals who are supposed to know what they are doing aren't so good in helping you to weigh up the options. This is their idea of trying to allow the patient to give an informed consent or choice. How the !@*^# can we, the average, shell shocked, overstressed and fearful person possibly be expected to make an informed choice after a half hour discussion with the doctor (if we are lucky) about the pros and cons. Especially since we also didn't think to bring a dictionary to the meeting. Thank goodness for OCF!!!
the OCF members can't make the choice for you either as most of us are not medics nor are we fully aware of the issues of your particular situation that may make our own advice wrong. I will however, share Alex and my personal experience but please remember that Alex is Alex not your husband.
You will see from my signature that we eventually chose cisplatin but will need to wait and see if that was the right decision. Alex is young (51) and very brave when it came to toxicities. He also had cisplatin as part of his chemotherapy regimen prior to the chemo plus radiation (which is the bit you are about to undergo). So we knew that cisplatin had worked on his particular tumour. We basically chose a drug that had been more extensively tested but might have more side effects over something that is probably just as good (but yet to be proven beyond doubt) and might have less side effects. HOWEVER, there were caveats - Alex is young, Alex is brave and Alex had the attitude of "hit me with everything you've got" and the side effects be dammed!
You know what I would do in your situation? Go to the doctor, and say "if this were you (or father, or brother, or best friend - pick a possible person who may be close to your husband's age), what would you choose and why?" and see what comes out. Be persistant though, you may have to ask the question a few times, cos your doc may see this as your attempt to make them make the decision for you and try hard to avoid the question.
Good luck and let us know. And remember, at the end of the day, all the agonising you are doing now is over two choices that the doctors believe in already - otherwise they wouldn't offer them. Once your choice is made, don't look back - you will waste energy needed for other things if you do.
Cisplatin is the gold standard chemo of choice for this cancer and has a proven track record and you have a very aggressive stage IV cancer with a high recurrence rate but even so this is a discussion that you should have with your chemo doc as no one here is qualified to advise you on a trial chemo.
Roma
I agree with all of the above. I did not even know about OCF when I was DX and we had to make a similar choice: cisplatin or the supposed wonder drug: Erbitux. I chose the wonder drug and it turned out the my particular tumor was resistant to Erbitux's method of attack on the growth factor. Plus it made my radiation dermatitis much worse than usual. When the tumor came back, my MO switched me to carboplatin for my second round of chemo.
It is a hard choice and the worst part is that if it doesn't work, then you second guess yourself (or maybe that's just me)
I don't have an answer, since I did not take either drug you have to choose between but I do have sympathy.
Charm
In the end, so much of our fate depends upon our MO and RO.
Roma,
You might find it helpful to read the discussion about these chemo option in Wikipedia:
http://en.wikipedia.org/wiki/Panitumumabhttp://en.wikipedia.org/wiki/Cetuximabhttp://en.wikipedia.org/wiki/Cisplatinhttp://en.wikipedia.org/wiki/CarboplatinPanitumumab (Vectibix) is similar to Cetuximab (Erbitux), monoclonal antibody anti-EGFR drugs. As Charm mentioned, these are not effective against tumors with certain mutations.
Cisplatin and Carboplatin (Platinum based)are similar and seem to also sensitize the cancer cells to radiation. Cisplatin is generally considered a bit more effective, but with more side-effects (liver toxicity and hearing damage).
Many patients have received a combination of both EGFR and Platinum chemo therapy. You might want to asked about a combo regiment.
Thank you all ! Christine, Karen, David,Charm and Don for your support and opinion.
Me and my husband finally decided to with Cisplatin. Treatment is due to start on Nov 1. But Doctor said he will confirm with us if the Chemo will be given the same day. Is it okay if chemo is given a day after or 2.
Typically the first chemo is given the first day of radiation and BEFORE the first rad Tx. Also typically his last chemo will be his last day of radiation.
I am amazed at how knowledgeable these guys are too!! Christine, David, jim, charm, Eric and Karen - your knowledge and support has helped me so much along the way.
Minh
Yes Minh I totally agree with you. I feel so good to hear such positive opinions. OCF is an amazing place.
David, I just recieved the confirmation regarding chemo. Yes they are giving it on the same day. But he will be staying overnight for that.
Thanks again !
Roma
Roma, please make sure you have your husbands hearing tested before he goes for chemo. Cisplatin can cause high frequency hearing loss. It did not happen to me but it has affected others here. Has your husband had floride trays made by the dentist? Its important that he sees a dentist prior to starting treatment so any questionable teeth can be pulled. Im sorry if this has already been done and I missed it. Sadly there are so many new people here that it can be hard to keep track.
I was given my first dose of chemo the same day as my first radiation treatment.
Thank you Roma and Minh for being kind. I try to help when I can. Just trying to make things a little easier for the patients.
Best of luck with everything.
Roma
Also be sure to demand a TSH blood test now before TX so you will have a baseline. Since individual's TSH levels can range from 1 to 3 or even 5 before TX, it's important to know what's "normal". Otherwise if the TSH level is under 5, the doctors will unfortunately insist there is no problem (unless they are endocrinologists who went to school in the 21st century)
I'm glad Brian posted the not so glowing review of yet another EGFR blocker drug not being so effective in time for your decision. I wish I had known about OCF when I had to make my TX decisions the first time
Finally, thank you for the kind words.
Charm
Kind of unusual to stay overnight to get the first day's Tx but my first day went from leaving my house at 6am and we didn't get home until 9pm. Mentally and physically exhausted for sure!
I had my 1st chemo with the 1st radiation. I was there for about 4 to 5 hrs and then went home. Good luck and prayers. Make him Eat Eat and then Eat as the desire for food gets less as does the taste and maybe the ability to swallow. I like Charm had Erbitux.
I was treated at Beth Israel in NYC and they insist on overnight also. When I asked why, they said that they will be IV hydrating me throughout, and will be monitoring my kidney function. Cispaltin is rough on your kidneys. Hang in and good luck.
Rob Jaffe
Hi Roma
Alex and I had a lot of experience with cisplatin. It feels like Alex was on it for 6 months. He had it during the first phase or treatment of chemotherapy alone and was dosed every third week for 4 cycles. We also chose cisplatin to partner with radiation during his chemoradiaion phase. This time cisplatin was supposed to be dosed a total of 7 times = once per week at a third of the standard dose.
Alex also stayed overnight for his first cisplatin dose. The cisplatin part of the procedure took about 5 hours because they put drugs for nausea through first then fluids to keep him hydrated then finally the cisplatin. The longest wait was for Alex to pee and they kept running the saline IV bags (for hydration and flush his kidneys) until he had peed a fairly substantial amount (800mL which I think is just under a pint). Of course the first time in the history of the world, Alex with his "Woolworths bladder", couldn't do it. On "chemo" days the routine was a large coffee whilst waiting to be "plugged in" and then 6 little cartons of apple juice whilst waiting for the bags to go through. This ensured we were never again delayed by plumbing problems (and we shared this information with every newbie we met).
In terms of timing of chemo during radiation, the procedure at our hospital in Sydney was to start chemo for new patients on the first day of radiation (usually a Monday) and then over the time period move the chemo to a different day to make way for the new patients coming in. Our chemo day ended up being Thursdays.
If you want to know more about cisplatin side effects and timings, I am happy to answer any questions either publicly or privately
Once is all starts, the trick is to just keep telling yourself that once today's treatment is done, there will one less treatment to endure. When our countdown reached single figures, we were almost jubilant even though Alex was as sick as he has ever been in his life. The end of the tunnel is so much easier to imagine when one is counting down from 10 compared with 30.
Alex also clung to the words from this website that assured him that 2-3 weeks after radiation finished, he would wake up and feel better not worse than the day before.
Christine my husband had his ear tested before the Tx began. Past 2 days he is complaining about the hum in the ears.
@ Karen @ Rob My husband had his 1st chemo with 1radiation and was asked to stay overnight. Doctors put IV then cisplatin and then anti nausea and wanted to monitor the kidneys. His treatment began on the 1st Nov. Tomorrow will be onset of 2nd week. He has been having nausea from last 4 days though he takes anti nausea pill. Some how he is finding most of the food tastless or blank. Even the sweet stuff does not taste sweet.
His next chemo is scheduled for 22nd nov. that requires overnight stay also.
Now i am concerned about the humming?
Roma, tell the doctors about your husband's hum in his ears right away. Make sure they are aware of this before giving him any more chemo. If this is affecting his ears then they can change the chemo.
Thanks Christine will do that today as we have an appointment.