I'd like to collect some first-hand and anecdotal experiences from you all. I guess what I'm really asking is the meta-question of "how much should I realistically expect to be able to continue with my job?".

I don't have a typical 9-5 sort of job in an office. I'm more of an IT consultant. My company is very small; I'm literally the only field technician we have and I do most of the remote and phone support already. A typical day has me scheduled to visit one or more clients 'on site'. Of course there are urgent emails and phone calls which pull me in to other matters and I try my best to make everyone happy. What can be done remotely is done remotely but I really do a lot of work on location. Putting 300 - 500 miles a week on my car going around the county is the norm.

How much should I reasonably expect to be able to handle after the treatment begins and things get tough and then for the duration? Obviously nothing has happened yet and I know nothing first hand but doctors and you folks are getting me ready for 'the worst'. And then I talk to someone and they relate a story of a friend or loved one or even themselves who 'soldiered through it' and it makes me think 'oh, maybe I'm over reacting'.

Not all treatments and cancers and patient responses are the same obviously. But I'd like to know from the OCF survivors how it was for them and what they would recommend I get prepared for.

Thanks,

Paul

First off RULE #1....Always keep in mind that all of us can react differently to even the same Tx.

That said, most of us that had concurrent Cisplatin (3 times) and radiation did not experience the worst of times until after the 2nd chemo or appx 15 days into radiation. It will continue to get worse and perhaps much much worse until about the 3rd week POST TREATMENT. I'm a CPA and own my own firm and I basically stopped working during that 7 week period ( week 4 during Tx till week 3 post Tx) but I had the luxury of my employees pretty much picking up my slack and I sent a letter to all my clients before my Tx began telling them what I was about to do and telling them I had no idea how it would affect me. During this stay at home period I first tried to use my home computer linked to mu office but I found my concentration was suffering and I didn't want to make a critical costly mistake to any client so I just stopped trying to work and devote all my energies to surviving the Tx.

A very small percentage of us have been able to work straight through so let's hope you are one of them but don't think anything negative if you can't. Refer back to Rule #1.

Some get the Cisplatin in 6 weekly doses vs the 3 bag method and they seem to have less "issues" that way but remember Rule #1.

You may start to experience some relatively minor problems from day 1. You will likely loose your taste early on but you MUST consume tons of calories and water from now thru at least your first year of recovery. By tons I personally would shoot for 2500 to 3000 calories and at least 48 ozs of water each and every day. You may eventually go on a strictly liquid diet when the pain from swallowing becomes too great for solids. Not having your taste also contributes to a lack of desire to eat.

Check out Fluoride Trays with your dentist. I wore those suckers from a month pre Tx until 5 years post Tx. My teeth were good going in and I haven't had any problems post Tx so far.

Get your TSH level checked pre Tx and remember your unique number in case your thyroid craps out a few months post Tx due to the radiation.

Watch for "ringing" in your ears as the Cisplatin can cause permanent hearing loss and that "ringing" is the first sign of damage. Tell your MO ASAP if that happens. They describe it as "ringing" but for me it was more like a very faint buzzzz.

Do ask tons of questions, that's what we are here for.

Greetings Paul!

I cannot add anything to David's informative post, but will offer my experience. While I didn't have concurrent Cisplatin/IMRT, Cisplatin was in my induction chemo phase. I was lucky not to have any major issues while in chemo, wasn't until I got to the IMRT that most of my problems started.

I was able to work through all but the last week of my IMRT. I went 20 treatments (4 weeks) had a 2 week break, to heal a bit, and then forged on for the final lap.

One other thing you need to know. Just because the IMRT treatments are over, you will still have effects for a period of time afterwards. It is not simply turning off the switch.

Good luck with your visit with the Dentist. My Oncologist still to this day shakes his head when I remind him I've still got all of my teeth

Kevin

I agree with everything said so far. I tried to come in the office as much as I could but that only consisted of a couple of hours a day. Car rides made me sick and there is no way I could have driven that many miles. I would say try to do what you can but remember your health is more important. You will need to ensure you keep eating and be able to rest when needed. I think working will help keep your mind from thinking about cancer but just have a plan for those days you can't work. Good luck!

Also, do not negate the fact that once you start heavier pain meds/narcotics that driving is dangerous and should be avoided.

Agree, from our experience, that three weeks into treatment was the beginning of the "bad stuff." Bill was able to work from home on the computer a week or so beyond that and then felt too lousy to continue. He did recover quickly once the treatments ended and was back working, driving, and eating within three weeks.

You are about to embark on a roller coaster of side effects, but everyone responds differently. The doctors will list the side effects but they can't tell you exactly how the treatment is going to affect you. In general terms the radiation effects are cumulative and won't start to affect you for a few weeks. In my case the Cisplatin hit me immediately and I struggled with severe nausea for the first 9 days. Getting the cocktail of meds right to deal with the nausea proved very difficult.

In answer to your question about work, I believe some people are able to but I would have been useless from day 2 onwards. I would make plans to be unavailable for work for the foreseeable future.

I would definitely avoid making plans that involve driving. Your immune system will be severely compromised by the Cisplatin and you should avoid contact with anyone with a cold or flu.

Stay in close contact with your doctors and nurses as the symptoms develop. Talk to them early and they can often help you take control before a side effect overwhelms you. You may be about to redefine your understanding of the words "nausea" and "constipation". Tinnitus stopped me from getting my 3rd dose, be aware of that as mentioned above.

Best of luck, I hope your journey goes smooth. Let us know how you go.

Thank you, all

This has been very informative and helpful. Yes, the doctors usually caveat expectations with "everyone reacts differently" but when I talk about all the driving, the randomness, the urgent requests from my clients - they council that my company needs to find some sort of replacement for me realistically.

I'll try my honest best to be useful (if nothing else to fight the boredom if I'm feeling well enough) but it definitely sounds like driving (after the 'badness' sets in ~ on average after 2 or 3 weeks until I'm full recovered enough to not be nauseous or on pain meds) is a non-starter.

So far all the doctors, nurses and office managers have been fantastic. I feel like I'll be in good hands. I'm sort of itching for it to start (in the 'sooner begun, sooner done' vein) but I'm also a nervous wreck.

What do you mean when you say driving is a non-starter? I drove for all but maybe 2 weeks during treatment and for 7 years after. I commuted each week about 500 miles each way. I drove because I had so many pieces of medical equipment. That was 7 weeks after treatment. It's doable.

Hang in there. This time and immediately after treatment are probably the times the mind races the most.

Uptown is one of the lucky few who could tough it out and still drive. I wasnt able to drive safely after about my 3rd weeks of rads. I felt my reflexes werent quick enough that I felt safe driving 45 minutes each way to treatments. Plus when taking pain meds driving is not recommended. If you can line up some helpers that would be great. Then you wouldnt have to be concerned about it at all.

The American Cancer Society has volunteer drivers available. All you have to do is call and ask for help. It will take a couple weeks to set up as your doc will need to fill out some forms. Even if you live far from the treatment site, it still doesnt hurt to ask if anyone is available. The ACS has drivers from all over willing to help.

Christine makes some great points. Sometimes, we may feel we can drive, in the midst of treatment, pain meds, etc., but take the extra step of having a neutral 3rd party evaluate your driving abilities. During that time and the last 3-4 years during my decline, I have a friend that is a private investigator and ex-law enforcement officer ride with me through rush hour traffic to make sure I am as safe as I feel. I try to do it every few months.

We had one member here from Florida that was a salesman on the road constantly. He never stopped working or driving. I think I pushed myself because of him, but safely.

I drove myself to and from Moffitt which was an hour minimum each way as I had to go right thru the city of Tampa. Yes it was 85% interstate and yes I was able to do it until my last week of rads BUT my last week of driving convinced me I needed help because not only would I have to pull quickly off the side of the road to toss my cookies but during that last week driving I would go thru a stoplight and then seconds later question myself what color was the light. Scary, not only was I a danger to myself but others and all because I had a chip on my shoulder.

I found the combination of the radiation and that horrible poison Cisplatin to put me in a fog towards the end. I was also very weak. Take advantage of all the people that will step up to help you. Concentrate on the real important task of giving your body every chance you can to deal with this cancer and it's treatment

By the time I had my first radiation in 2010, I could hardly walk, see, and was half the person I was due to the chemo I received a year earlier, and haven't driven since. The radiation center, about 3 miles away, had a Mercedes van that picked me up at home, drive me back.

In 2012 I stayed at Hope Lodge for my 6 weeks of chemoradiation treatment. Some hospitals like MSKCC, had regularly scheduled vans from there, mine didn't, but I used access-a-ride to and from.

This past December/January I had a designated driver take me to Proton Therapy in another state, 32 miles each way, which company was worse than my treatment lol. I was glad to get under the machine! Plus I was paying $75 a day cash!

In another note, a day that I couldn't be driven I was screwed, but friends seen my need, and came forward like David mentioned. Not only did they drive me, no charge, but was taken out to eat, given a get well card, and a donation by their company! A friend of his cancer organization later made a contribution too! He said anytime I need he or his brothers would drive me, and many other people said that too, but being my usual self, not wanting to unconvienance or ask, I continued paying someone to drive me.

I had a problem getting a volunteer driver from ACS due to going cross state, tolls, no one going there, etc. No gas reimbursement or out of pocket expense like for tolls in my area.

Good luck