Second Chemo Session Started - Hmmm, Houston is This Maybe The Start of The Fun?

John212 said:

Getting caught up here

I've been absent for a few weeks - a longish story - so I'm glad I was able to get caught up on your progress here. All of the things you're experiencing are common with oxaliplatin patients. For me, the jaw pain when eating disappeared within a day or so of pump disconnect and then it went away completely around the mid-point of my treatments. Same with the shards of glass feeling in the throat, so I wonder if they're somewhat related.

I noticed the first bit of cold sensitivity my very first day on the pump with 5FU, and it was startling. Last March in Chicago, so it was probably in the upper 40s in the evening. I stood outside talking with a friend for a few minutes after a meeting, and when I got into my car I could feel tingling in my fingers. I'd bring this up with your oncologist and ask him/her about strategies for minimizing the onset of neuropathy. There are some techniques available that have shown some promise, such as wearing ice-cold mittens and foot wraps to force the blood away from your extremities during treatment. I know there's a strong Integrated Care unit at Memorial Sloan Kettering so they may well have some answers for you in this vein. Don't let this slide: attack it now to minimize the long-term damage.

 

 

Seems where it starts becoming normal again.  The Friday/Saturday are the real tired days.  A lot less tingling in the fingers and toes compared to the second one, or so I think.  Couple of new things, the metal/cool taste/feeling in my throat and abdomen.  Small sips of room temperture drinks seems to be okay.  But need to be small.  

The upper 40s was where I had the reaction, on round 2, to the cold in the hands and toes.  And it happened extremely quickly, under a minute.  The ocologist seems to be generally of the mindset of dialing things back if the symptoms get too severe.  His goal is 9 sessions with the Ox, 12 altogether.  After 9 he thinks the risk of neuropathy issues far outweigh the incremental benefit of the Ox in the mix.

I need to call the Integrated Care to see what they can add.  My oncologist has no issues with those things as long as it has not shown to be detrimental.  So things, such as huge does of x or the rest, can be issues.  There is also another doctor who works in integrated oncology I will try to see.

Yolllmbs said:

I had the

same reactions.  My tiredness came the day after the pump was removed.  I've been finished with chemo for 6 months now.  I smile when I read your posts.  I remember posting in the same way.  It's so exciting to see those numbers go down!  Good luck with your neuropathy.  My neuropathy got bad enough to stop treatment in round 9.  ( I was supposed to have 12).  I do still have the tingling in my hands and feet.  On occassion, I will get sharp pains.  I take lyrica and that helps tremendously.  I have the constant sensation that I'm holding a crayon with my toes.  It's just an odd sensation.  I lose my balance easily but honestly I wasn't graceful before.  All signs of pain in the jaws and cold sensation are long gone.  Pretty soon, you'll be sharing your story with those that are just beginning.

 

Best,

 

Yolanda

Everyone here has been great.  I started "paying it forward" in the hospital two days after the surgery and in the waiting room for some people I have run into more than once who had concerns.  The example set by everyone here is one to try to emulate to as much as possible.   

Trubrit said:

I Remember it Well.

(Thats a song I believe)

I remember feeling guilty for being 'Lazy'. Once I did push myself, and fell over doing the dishes. 

Sleep if your body wants to sleep. Crash, if your body wants to crash. I doubt there's a lazy bone('s, Sleeping in the Sun' Thats another song) in your body. 

Keep on keeping on. You'll be past this and looking back, soon. 

Sue - Trubrit

For sure.  When people ask, I tell them I really can't complain.  And in the grand scheme of things, I really can't complain.  I do not recommend this for people's "to do" list of course, but I have one person who is recently diagnosed who I have been letting them know, it is doable and beatable.

Passing on the all good things from here to others.  As mentioned more than once, everyone here rocks and I am so glad I found this place.  

John212 said:

Chemo Travel

I didn't feel like doing a whole helluva lot during my chemo treatment period, but I also wasn't miserable - just lethargic and tired all the time. Somewhere around treatment #10 I flew back East for a high school reunion (class of 1850, it felt like). The timing was excellent, as I returned a couple days after the reunion and then went in for my scheduled infusion the next day. The flying and airport waiting didn't bother me too much, though by then my feet were always sore when I walked any distance so I just had to grin and bear those interminable airport terminals. I'd say that as long as you can stand the idea of going out to the hardware store or to see a movie, you should be able to take a relatively simple vacation trip. I wouldn't advise trying to do any mountain climbing or an eating tour of Thailand, but it could do your spirit some good to see a different set of four walls for a few days.

My cousin and family are heading to the Carribean to a place my wife and I love.  We were going to tag along, been thinking about it for a couple of years and planned on going until the January news.  Anniversary of us meeting, give or take a week or two.  But we do not get a chance to hang with our cousins enough (they are left coast) so would be fun.

Looked into travel with the Port and TSA issues.  The timing would be good in terms of chemo session timing, but it would be about 6 hours travel, give or take, and not many flights back if needed.  Will play it by ear and see how the next couple of sessions go.  Perhaps a last minute decision.  Of course scuba diving off the table  

Been making small runs and actually went into the city for a Rangers game.  Does take a bit more out of me, but when they come up I got to try.  Thinking of also maybe a road trip to see my niece and nephews.  

Weds the 5th session gets disconnected.    The next big thing is a scan sometime after the 6th.  But I am chugging along..

Easyflip said:

It's just

30 gallons. It's called a nano reef. Fish plus lots of corals. A fun hobby!

I can stare at fish and coral for hours and go back and forth about getting a tank.

Cannot wait until I go diving again.