Hi Jay,
We are now 1 year out and I can tell you that I have just recently not thought about recurrence on a daily basis. It is the thing we all fear most, whether the patient or the caregiver.
The end of treatment is also a strange sensation because you go from the hub bub of surviving and knowing you are DOING something daily to...what? Waiting, worrying and just trying to get some normalcy back to your life.
You asked how we handled it...I can tell you that here it has been focusing on the kids and making their lives as normal as can be after last year. This past summer we tried to do lots of fun things to make up for the previous summer that they spent cooped up in the house because we were gone so much. They were awesome about it and always had a smile on their faces throughout the whole ordeal, as well as maintaining GPA'S of over 95 at the end of the school year!!!
I guess I'm just saying to focus on the great things, of which you have, and just be there for each other, which you have proven you are doing by your obvious care!!! It's the new normal and we have all either lived it or are living it. We're in it together. Thank goodness for this site!!
Blessings,
Kathy
PS...thank you for your updates! You are in our familys daily prayers too!!

So glad you and your wife are doing well! You will get through it. The end may be harder but she sounds like shes coping well. I didn't need my meds until the last few days and for the first few days after treatment finished. It's was by no means an easy path but I was still lucky compared to some.
For the first while everything has you going... Oh my god this isn't normal... Is this a recurrence. I off set that by checking my neck weekly and looking around my mouth weekly, if theres something genuinely concerning then i make an appointment woth my ent. Then I try to put it behind me. I have to assure myself that my surgeon was awesome, hospital great, and ive done all i can - from diet change to follow ups, to suppliments to help try and prevent a recurrence so at this point it's up to fate and destiny. I still think about it - but less so. Blessings to you.and good luck for the coming treatments.

Thanks all for the words of encouragement.

We had another session of Radiotherapy today, and a follow-up meeting with our Medical Oncologist.

One thing that has been getting slightly worse is the ringing in Jen's ear which would happen around 5 times a day in 3-4 second bursts.

The MO decided it was best to be safe than sorry and has moved Jen onto Carboplatin instead of the Cisplatin for the last 3 administrations of chemo.

I know that the compounds of the two chemo drugs are the same and studies show no difference between the two apart from the fact that Carboplatin has substantially less side effects than Cisplatin.

I am curious to know then why if this is the case, not all patients start off with Carboplatin rather than Cisplatin instead of administering it under special circumstances?

Thanks in advance for your help on this matter and look forward to your insights

Jay & Jen

I think it's just because it's a newer drug. And that's what most drs. move to. If one is as good as the other then so be it, do whatever causes less damage.

hugs... tell her she's getting there... ;o) slowly but surely.

It's good they are switching her over. Kevin has permanent hearing loss now and is a bit frustrated about it. I'm not sure why they don't use the Carbo as the first choice if they are the same, except that maybe the Cistplatin has been around longer?
Kathy

Well we had our first administration of Carboplatin and I must admit - it was 10x more simpler than getting Cisplatin that's for sure!

Took us less than an hour (compared 4-5 hrs) and we were out of there! No pre / post medication required and it almost felt it was too easy...

Considering Carboplatin was approved by the FDA back in 1989, I would think it has been around long enough to be used ahead of Cisplatin in the treatment of H&N cancers if the studies show that there is no difference in the treatment outcome.

Does anyone else have any further insight as to why Carboplatin is not the preferred drug over Cisplatin in the instance it is used as adjunctive therapy to assist with Radiotherapy?

Thanks
Jay

Hi All,

Just wondering if anyone had any answers to the question above:

[quote=Jay Jeong]
Considering Carboplatin was approved by the FDA back in 1989, I would think it has been around long enough to be used ahead of Cisplatin in the treatment of H&N cancers if the studies show that there is no difference in the treatment outcome.

Does anyone else have any further insight as to why Carboplatin is not the preferred drug over Cisplatin in the instance it is used as adjunctive therapy to assist with Radiotherapy?

[/quote]

Have looked everywhere but no answer till date

Thanks in advance
Jay

Jay, I was wondering about that myself, as Cisplatin would have been a no go for me as I only have one kidney.

Any one know the answer? My research suggests Carboplatin has less of the serious side effects but all the benefits, so what gives?

Basically the reason that Cisplatin is used first instead of carboplatin is that most of the studies done used cisplatin so it has a track record
. Plus several studies cite a 1998 meta analysis that indicated cisplatin was better than carboplatin for head and neck tumors. Carbo vs Cis study

Cisplatin is called the �penicillin of cancer� because it is used so widely and it was the first big chemotherapy drug. Cisplatin also plays an interesting role in the history of chemistry. First synthesized in the 1800s, long before anyone thought of using it against cancer Cisplatin and carboplatin as cancer agents were discovered by accident in the 1960s when Michigan State University researchers used platinum electrodes for some experiments. The researchers though that the electrodes would be �inert,� i.e. that they would not react chemically. But when an electric current was applied, it reacted with the growth medium to form filaments that interfered with cell division. The researchers reasoned that this might be useful in cancer treatment, and the drugs were eventually patented in the 1970s.

Carboplatin's patent expired in 2002. Cisplatin's expired back in the 1996 but Bristol tried a second patent in 1995 that was overturned by a district court and then appeals court in 2002. Accordingly, there is no financial incentive for any drug company to spend the money necessary for clinical trials comparing cisplatin and carboplatin for oral cancer. Any drug manufacturer can make either one without paying royalties.
Contrast that to Erbitux which is patented hence all the clinical trials and studies being pushed and financed by the patent owner. Even the big RTOG study whose results will finally settle the Erbitux issues here, pits Erbitux against cisplatin, not carboplatin.

In two trials comparing cisplatin and carboplatin for ovarian cancer in the carboplatin package insert on Bristol Myers Squibb web site, cisplatin had a small edge in 3 year progression free survival, 23% to 19% in the NCIC trial and 14% to 8% in the SWOG trial but overall survival rates (allowing recurrences) were better for carbo in the Canadian study but worse in the Southwest study.

So at this this point, oncologists juggle the toxicity of cisplatin and the slight differences in the studies. I do not see any scenario of funding going to resolve which of two old patent expired drugs is better. Too bad for oral cancer patients though. The one bright spot is a June article in the Indian Times about a potential breakthru to have cisplatin efficacy with carboplatinum's less toxicity:
[quote]
They increased the size of Cisplatin by joining it with cholesterol. The enlarged molecules are too big to get into the body tissues and damage them but cancer cells have larger pores that let them through. In lab studies, the conjugate drug was shown to be far less toxic, but highly effective.
Sengupta and Mashelkar have set up a Delhi-based company, Invictus Oncology, to take this modified Cisplatin to the market. Invictus had licensed the technology from the non-profit Partners Healthcare, founded by the Brigham And Women's Hospital in Harvard, where the research was carried out.
Charm[/quote]

Thanks for that Charm - it is greatly appreciated and it gives me a starting point to look into this further.

Will share it here if I find anything else but it seems to me that your post covers all bases!

Kind Regards
Jay