Erbitux

My husband had 35 radiation treatments with 2 concurrent Cisplatin (100) at weeks 1 and 4. After that he did one round of Cisplatin + 5FU, but couldn't tolerate any more. He has very severe side effects from both the chemo and the radiation.

Would we do it again? absolutely, because there is no evidence of disease after the treatment for us. The Cisplatin affected his hearing, but it shrunk and killed those cancer cells. It is also a radiation enhancer.

If we did anything different, I would have voted not to do the adjuvant with Cisplatin and 5FU, but that was his call to make...and he felt he had to try. He didn't want to be asking what if?

Each person will have to make their own best choice. Good luck with making YOUR best choice, and prayers for your recovery.

Barbara

Hi Raddude,

When facing"The Monster" there are decisions to make and like Matt I listened to the professionals. In July of 1991 my Dr. suggestioed a relatively new chemorad simultaneous treatment to defeat my stage iv scc that was surrounding my vocal cords. In todays parlence I said "I am all in Dr." I am very blessed to have cellebrated my 24 year of final treatments on this past November 22nd. Thank YOU Lord, med-team, wife, family and friends.

Was it easy? No, but it was worth it. I finished fifteen more years of public school teaching and use my voice without a problem in my second career with the public even though some of my customers think I did the "voice over" for Brando's "Godfather's"role. I have no problem with that.

Good luck on deciding if this is, "A decision you can't refuse!" josh r.

I am the type of person who is very proactive with my health and medical treatments.  When my medical onc told my that the treatment plan for my scc was a cisplatin.  I immediately started to research.  Everything I read suggested that this regimend had many potential side effects, some of which may not show up for many years and some permanent.  Emphasize "potential" because not everyone will have major or permanent side effects, but the risk for me was concerning especially hearing loss and tinnitus.  I already have moderate to severe hearing loss.  

I searched for alternatives and looked at current drug trials and found out that Erbitux had recently been approved by the FDA for treating scchn.  I asked my med onc what he thought and he consulted with others in his group and agreed that Erbitux would be an very good alternative, especially considering my hearing issues.  To this day Erbitux does not get nearly the attention of the cisplatins probably because carboplatin for treating h&n cancer has been in use for over 25 years.  With that kind of history it is difficult for a med onc to push something relatively new.  

The side affects for me were minor.  I did have the typical acne but it was easily treated and short lived. Since Erbitux is new there is not much on which to judge success but so far so good for me.

If I had to go through this again I would make the same choices except I would opt for proton therapy instead of TomoTherapy (IMRT).  However at the time IMRT was  supposedly the best since proton therapy was not yet available.  Proton therapy is very precise, even more so than IMRT which makes it very useful for recurrances where additional x-ray radiation may not be adviseable.  Problem is that proton therapy is VERY expensive, the cost of the equipment and the dedicated building is about $150 million.  There are not many places offering this treatment but Mayo Clinic does.  They found that due to the costs most insurance companies would not cover the treatment.  Now I believe they have agreed to only charge what they would for IMRT. A friend of mine was going to do this but the waiting list was 2 months out and he did not want to wait.  Best of Luck and Merry Christmas to all.

John

When I first found out my diagnosis, my computer went on overdrive. Before meeting with the oncologists,  I had decided radiation and Erbitux would be my choice if there was one. It is my understanding that chemo enhances the effects of radiation and the odds of beating the disease. With H&N cancer, it is never an easy course of treatment. Erbitux is a monoclonal antibody that harnesses the power of your immune system to fight the cancer. It has fewer bad side effects than the platinum based drugs. To me, the side effects of Erbitux and the success rate were worth the risks. It has been 14 months since the last treatment and my doctors are very optimistic. I would do it again.

I know there is a clinical trial going on now with reduced dosages of chemo and radiation. If it were me, I'd seriously check into that and see if you qualify. 

We were offered two choices - either robotic surgery with reconstruction, radiation and probably chemo due to the later stage. Or chemoradiation (IMRT)using weekly cisplatin for 7 weeks. We didn't research and just trusted our team to give us the best possible advice and chance of fighting the cancer. 

This might not be a good comparision, but I had a friend with breast cancer who resisted conventional treatment and didn't want to do chemo in particular. I think she was afraid of losing her hair. Her tumor grew until it was almost the size of her breast. She is now stage 4 and being treated with oral meds. 

My husband wanted a sure thing so we went with chemoradiation and are keeping surgery as an option if that doesn't clear the nodes. Sure, cisplatin is probably old and outdated. But they know that it works from proven studies. Studies much like the ones going on now, but are not completed or haven't become the gold standard yet. 

Yes, the treatment can be rough, no doubt about it. After the first chemo, my husband had a strong reaction to it and almost quit right there. But he didn't, thank goodness. Not everyone has that bad of a time. It all depends on your body chemistry, not how big and tough you are. But this is the hardest thing we've ever done - no doubt about it. You gotta be strong mentally to fight this fight. Others before you have done it and I just read of josh celebrating 24 years - wow! So I won't sugar coat it, the side effects can be severe in some cases, but according to what I see here, most of the time you do get to live a fairly normal life....translate you get to LIVE. The only word I focused on was "curable." But as I see it, you gotta be a fighter and come out fighting with everything you've got. You've got to hit it hard from the beginning - that's your only chance of beating it. Just my opinion for what's it worth.

Sounds good. Best of luck to you. Please keep us posted, Raddude!

Raddude said:

Thank you all

I have decided to move forward with the Erbitux. The information provided by everyone helped me to make that choice.

I begin on 1/4/16, and like most said I think I should throw the kitchen sink at this beast and do my best to terminate it.

 

Admittedly, I am biased but it worked for me. Best wishes and good luck.

John

my last treatment was in September. Spent the entire summer in chemo/rad therapy.  It's very difficult, that's no lie.

its hard to describe to some one what you are going to go through. But believe this one fact: you WILL die if you don't. 

Do not waste time looking for the easier way. You must face and accept the treatment plan your doctors prescribe. It's going to be over soon enough, and there's a very very good chance you'll be cured; because these cancers are treatable. 

I just got my first PET CT scan post treatment, no sign of active disease. For now, I feel relieved. The HELL I went through was worth it. I'd do it again now because I know I had the ability. I also had some of the finest specialists. I also have a devoted wife who helped me keep from quitting. 

Save yourself. This is going to change you, to a new better person. But you must get on board. Don't delay. 

Raddude said:

Thanks all

Getting ready for next week and I wanted to reach out and thank everyone. Looking forward to the fight and i'm ready.

Happy new year to you all and god bless.

 

 

Go! Beat that cancer Raddude! Keep us posted and we'll be thinking of you and hoping for all the best.

Barbara