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Another update on Dave

Bermudagirl
Posts: 120
Joined: Jun 2012

Hello everyone,

Well tomorrow Dave will be finished his 3rd week of radiation. Two more to go! And now we are separating the men from the boys, so to speak. He has been doing well, is on a continuous 5FU drip, oxaliplatin every other Thursday, and of course daily radiation. I continue to be amazed at his spirit and tolerance. If it were me I guarantee you I'd be in bed with the covers over my head!

But now the side effects are beginning to show. He is having much more difficulty swallowing, food is tasting like well, you know... he is incredibly fatigued. He is complaining of some back pain, not sleeping well, and noticing some neuropathy in his fingers (not good for a guitar player!)

When he saw the radiation nurse this morning she consulted with the chemo nurse, who in turn called Dr. Kelly, the medical oncologist. The nurses thought perhaps scaling back the 5Fu, but Dr. Kelly said no, we are going for a cure here, so lets just try and get through this. Dave agreed. After a long nap this afternoon he said he was feeling better.

He has just two weeks to go, then he'll be unhooked from the 5Fu, no more daily trips to Hopkins, and he can get his strength back for surgery. We just have to keep our eye on the prize.

Sandy

paul61's picture
paul61
Posts: 1105
Joined: Apr 2010

Sandy,

The side effects of chemotherapy are cumulative for many people. I had six rounds of cisplatin, epirubicin, with a continous 5 FU drip. I found that when I got to cycle number four I was having many of the symptoms that Dave has. I was on a three week cycle where I got the infusion of cisplatin and epirubicin on Monday every three weeks.

I found that if I went in for IV hydration on Wednesday of the week I got my infusion of cisplatin and epirubicin I felt much better. Once I figured out how important that IV hydration was to me the last two cycles were actually easier than the fourth cycle.

You might have Dave discuss this with his chemotherapy nurse or his oncologist when he receives his next infustion of oxaliplatin.

Best Regards,

Paul Adams
Grand Blanc, Michigan

DX 10/22/2009 T2N1M0 Stage IIB
12/03/2009 Ivor Lewis
2/8 through 6/14/2010 Adjuvant Chemo Cisplatin, Epirubicin, 5 FU
Two year survivor

Life may not be the party we hoped for, but while we are here we might as well dance!

BMGky
Posts: 666
Joined: May 2010

My husband was hospitalized twice during chemo/radiation. The last three sessions completely depleted him. He had nothing by mouth from midway through the chemo and after the surgery until he returned home following his esophagectomy. His j-tube was his lifeline. It was suggested the treatment be weakened but we opted to go the route as we're talking an opportunity for NED.

To even have the opportunity to go through the challenges of treatment is a blessing. His oncologist said the treatment was brutal, and he wasn't kidding. But, here we are two years later, last scan NED, and enjoying every day.

It's hard, but all on here are pulling for him.

BMGky

Bermudagirl
Posts: 120
Joined: Jun 2012

Thanks everyone for your kind thoughts and well wishes. I have been encouraging Dave as well. Heck, if you can drive each day to Hopkins, go grocery shopping, and keep a smile on your face, I think you are doing pretty damn well! He's not working now, he's fortunate that he has lots of sick leave, and I have told him to just do only what you can, eat only what you can tolerate, and just get through it. In two weeks it will be over!

NLMCEM
Posts: 52
Joined: Aug 2010

Sandy and Dave , We found that Nino needed IV hydration twice a week Monday when he had the chemo and usually Thursday or Friday during his chemo and radiation treatments. The days he was feeling worse they would also give him the IV hydration. Also when we came home after treatment and before surgery MIE a nurse came on Monday to access his port then he did daily hydration himself and Fridays she would come back to de-access his port.

Nino had the 5 weeks of chemo and radiation also. Chemo was every 1st 3rd and 5th Monday along with the chemo carry bag that pumped it in his port Monday through Friday. Pin point radiation every day for 5 weeks with Dr. Hales (what a wonderful man / doctor)
Nino also became allergic to the nausea meds almost immediately once chemo started, drugs he took before with no problem like Oxycodone and Prilosec he can no longer take. That presented more yet to deal with.

Curious does Dave have a feeding tube?? Nino went from 190lbs down to 140lbs. To this day with all the dilation's he needs and still trouble eating or even drinking his weight is staying a steady 150lbs although he has been fatigued it is just now becoming worse and that is why they suspect the mass on his lungs are mets. I am hoping maybe an infection as I read a post here earlier that is what they had. Its a 2% chance! Doctors say 98% it is mets.
Nino is having quality of life though and has been on disability since 2010 due to the fatigue and pain level. Through it all he has had a positive attitude and still does things he likes even though he may not get to finish and needs assistance now.

July 2010 T3 N1 M0
July 2012 T4 N0 M5
Also for anyone reading this. The Med Port was Ninos best thing. They removed it just this past March and unfortunately they show several small mass on his lungs now. Dr Kelly is meeting with the other doctors to discuss next line of treatment without a biopsy because the mass are too small to get a biopsy from so they say right now. May be getting another Pet scan in 2 weeks to see if there is any change.
We had Jane for chemo nurse and she was wonderful. Dr Jergeuns was our medical oncologist when we started this journey July 2010. So we met with Dr. Kelly this month. Already discussed med port and he is all for it thank goodness.
Best to you
CEM Carolyn Ninos wife

Bermudagirl
Posts: 120
Joined: Jun 2012

I have mentioned the hydration to him. He sees the radiation oncologist this morning, so hopefully he'll bring this up.

I spent most of yesterday with him at his house,and we even managed to have a fight! Just cause you have cancer doesn't mean that we still can't disagree about things! Our fight of all things was either over seeing the Batman movie (ah no...) or the new Meryl Streep. We ended up not going as he just wasn't up to it, but tensions were running high. I think that it wasn't over the dang movie, just a way to get out some fears on my part.

He continues to hang in there, but has really bad mouth sores on his lips and inside his mouth. Poor guy is feeling miserable, but his blood counts are still great, he is able to be self sufficent living on his own. I continue to be really proud of the way he is handling this,

And Carolyn, yes Hales and Kelly at Hopkins are great. I am sooo pleased with the care Dave is getting there. Yang completes the team as his surgeon, and as a matter of fact surgery is now set for Monday October 8th.

monica_sss
Posts: 57
Joined: Dec 2011

I've replied to you before but I don't know that we've ever conversed about my Mother using the same Hales/Kelley team. Dr. Hales and his nurse Amanda are fantastic. My Mom had her surgery with Dr. Mark Duncan in early April. I want to encourage you to INSIST on hydration. They can keep Dave hydrated during chemo. They have specific hydrations rooms just for this purpose. My Mom was late on insisting this, and it resulted in her needing to be on 24 hour TPN bags -- no fun. Catch it early and keep up. Best of luck, it sounds like he's a real fighter.

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