Hello, Lea.

I'm getting my treatment at Mass General Cancer Center. They medical oncologists there prefer carboplatin, which is a sister-drug to cisplatin, with milder side effects, but proved to be just as effective as cisplatin. White cell and platelet counts are not disturbed as much, kidney damage is less likely, peripheral neuroplathy is less likely/severe, and most of all, hearing loss is not generally a problem. These side effects with carboplatin are further reduced with smaller, weekly doses with concurrent IMRT for 35 treatments.

My treatment plain is 35 IMRT and 7 weekly carboplatin & taxol. According to all of my doctors, they are throwing the kitchen sink at me and treating me very aggressively due to this being a new primary tumor in a relatively young person without risk factors.

I would ask his team about a switch to carboplatin and smaller, weekly doses vs. 3 big-bag doses. Sometimes doctors just get into their own routine and do things a certain way, when the same benefits can be given to the patient with a lower risk of side effects, delay of treatment, and better treatment tolerance.

Those that don't ask won't get and certainly, those that don't know the how and why will never fully understand their treatment options along with the risk/benefit ratio of each.

Best of luck!

Hi Lea,

So sorry you and your dad have to be on this journey, but I'm glad he has such a supportive daughter by his side. The role of caregiver is one of the hardest, but most rewarding.

My mom was initially told she would be doing the 3 bag method of Cistplatin, in conjunction with 6 weeks of radiation, but before she started treatments they changed it to the 6 bag method. She handled it VERY well, and when I say VERY I mean she almost felt better after her weekly intakes because of the hydration she was getting at the same time. A few days after chemo she would crash a little bit, feeling tired for a few days, but bounced back pretty well before she was due for another. Our perception of chemo vs radiation for cancer treatments is often that chemo is what will cause the most discomfort, but oral cancer is an entirely different ball game. Rads is what will cause the most discomfort, and chemo is the easier of the two, at least when given in smaller doses. I think if it is just as effective, as it seems to be, it makes all the sense in the world to go for the 6 bag method so your dad doesn't have to endure the harsh side effects and can stay strong to fight this.

Best of luck to you both. Please let us know how he gets on.

Amy

Kerri,

The problem is that is was no study comparing Cis to Carbo as far as I am told so that is why the majority still defer to Cis even though most if not all MO's will tell you "Carbo is just as effectice as Cis but without the nasty side effects." When I have pressed the obvious THEN WHY DON'T YOU USE CARBO? they all respond that they lack a study to confirm that but based on what they know about the 2 platium based drugs, that's a reasonable conclusion.

One week done... 6 more to go!
We start week two of treatments today. The reaction to Wednesday's chemo was minimal. However the effects from the 1st week of radiation are slowly starting to accumulate. The flap is very swollen. Skin has started to change (dryness, sensitivity and redness). There is swelling of the checks and neck area. Swallowing has already started to become more difficult. Taste has changed. Tonsils feel swollen and hard. Saliva has thickened. Body Temperature has dropped.
It terrifies me to think all this is happening after only the first week.

Lea, ask the doc for some prescription cream to put on your dads neck area. Never put it on prior to going to treatments or rub it in. After he gets dressed, he can very gently pat some on and then again when it soaks into his skin. After a shower he can dab more on. Just never put it on at least 3 or 4 hours before rads as it could interfere with his treatment. He should use it every single day several times per day.

Even when swallowing gets difficult he MUST continue to do it every single day, several times per day. This can be a challenge towards the end but in order to maintain his swallowing function he needs to use it. Nutrition and hydration will be the key to getting thru this easier.

Hi Lea

Great attitude with the countdown. Just wait till you can start counting in days and when you get to single figures it is even better.

Regarding side effects: the trouble with chemoradiation, is that it is difficult to figure out which is causing the trouble. We immediately leap to radiation as the culprit. We naturally associate nausea with chemo but forget that it could also be responsible for taste disturbances, stringy mucous, and swallowing issues - especially during the first couple of weeks. Even the radiation caused ulcers that your dad will likely get can be also be be made worse with chemo drugs.

Don't forget that the upside is that chemoradiation has been proved to improve your Dad's chances which is why the doctors are putting him through this misery.

Which treatment is causing which side effect probably doesn't matter at the end of the day - except that you can be reassured that if it is chemo affecting him, then his side effects at this point are not so surprising.

For Alex who had 3 different types of chemo only for the first part of treatment, thick stringy mucous started at day 5 and smell disturbance started day 6. Taste disturbance was almost immediate and changed from week to week. Something that tasted ok one day was foul the next and vice versa.

Keep the attitude up Lea, your father is following the path that many have trodden before and his reaction to treatment is not so unusual.