Hi Mary,
I hate to say this, but distant mets mean you have entered the great "Whack-a-mole" contest. I've been playing this for the last three years and it's actually not so bad, it just involves a LOT of treatment, mostly chemo of one form or another.
My experience is that it usually take 4 months, and then which ever batch of tumors you are treating is defeated, and you have maybe 4-6 weeks before a PET scan to evaluate your progress and determine that there is NED.
90 days later, you get the first follow-up PET, and new tumors have showed up to join the festivities. No big deal, just "rinse and repeat."
I've found this to be very low-key and nothing like the stress you encounter when you get the news the first time, because by now you are both battle-hardened veterans and know how these things go. Very much UNLIKE your first introduction to the disease.
Some caveats and some gratis advice:
When going to an appointment to learn about where you stand, it's important to not attach to the outcome. No matter what you learn, you are learning what is and not what you'd like. Don't think of it as "good news" pr "bad news;" rather think of it as simple information, because that is what it is.
Some times the news IS good news, other times it is not; it's simply the truth.
I know it's a clich�, but the fact is that while it may not always be welcome, the truth is always the truth and it's easiest to deal with when you know it.
Stay on top of your nutrition and hydration. Accept the fact that you will need the same daily MINIMUM water intake of 48 oz for the rest of your life. The water will be crucial to keeping constipation at bay, and equally crucial in carrying the bi-products of the treatment away (toxins and dead cells) before it can make you so nauseated.
(Actually, EVERYBODY should drink 48 Oz water daily, but I digress...)
Join a gym and start to lift weights. You don't have to go for the Muscle Beach look, you are going to build muscle; mass, density and strength.
This will pay off two ways; being fit will help deal with the chemo in ways you can't even imagine (and the odds are hugely in favor of having more chemo along the way,) and being fit will also help deal with the effects of radiation poisoning.
I'm 75 (next month) and my MO told me plainly that he would not normally even consider the latest round of radiation for a man of my age, but was confident that my superb level of fitness made him confident that I would sail through it. And I pretty much have done that.
OK, that's it, thanks for reading. And good luck!!!
Bart
Last edited by Bart; 04-07-2014 02:59 PM.
My intro:
http://oralcancersupport.org/forums/ubbt...3644#Post16364409/09 - Dx OC Stg IV
10/09 - Chemo/3 Cisplatin, 40 rad
11/09 - PET CLEAN
07/11 - Dx Stage IV C. (Liver)
06/12 - PET CLEAN
09/12 - PET Dist Met (Liver)
04/13 - PET CLEAN
06/13 - PET Dist Met (Liver + 1 lymph node)
10/13 - PET - Xeloda ineffective
11/13 - Liver packed w/ SIRI-Spheres
02/14 - PET - Siri-Spheres effective, 4cm tumor in lymph-node
03/15 - Begin 15 Rads
03/24 - Final Rad! Woot!
7/27/14 Bart passed away. RIP!