Another wait & see til next scan

[KathyC]

Has been along 16 days but finally saw oncologist today. PET showed, as did the CT a few wks ago, that there is still a small area in the mesenteric nodes. Considering how widespread this was in the intestines & up thru the chest & around the heart it is a big improvement. The good news is that the remaining, original spot is smaller than the PET showed it to be last Jan. Oncologist consulted with radiologist while we were there. The PET shows this area as mildly "hot" & since other areas have cleared up so well they think we should wait & see til a new PET in early Sept--they just don't know if it is still an active cancer. I couldn't resist commenting that this time we will avoid injecting DH with remicade & feeding him additional immune suppressing drugs while we wait & see like we did last Oct so that if it is still an active cancer that maybe it won't grow so fast. Dr just shook his head. If this hot spot changes by Sept, it appears we will be heading to Iowa City for a transplant & we're not too anxious to take that on--at least not yet. A problem we do have is all the spasms/charlie horse like pains he has been having in his hands, arms, & legs as well as extreme weakness in these areas. This has been a problem since about his 3rd chemo but only intermittently. However, it has been a daily occurrence for approx 3 wks now & the severity of each "attack" seems to be based on his activity level. We assumed it was a reaction to chemo but dr says NO he doesn't think so. Blood tests were taken today to see if we need to go back to a neurologist--oncologist is wondering if perhaps he has myasthenia gravis, an auto immune disease that affects muscles in the body (he already has Crohn's disease & Paget's disease which are auto immune diseases). Medically speaking, his body is still a mess but at this time we are much better off than we were last Jan. So, unless they find he has this muscle disease, we are in a holding pattern with the cancer which for a while anyway, gives us a chance to catch our breath for a while. Thanks for your support.

 

[popcorn]

My goodness you have being going through some massive hoops! But at least you have had some good news. Take care of YOU. Thanks for keeping us up to date.

Liz

 

[nieciez]

Kathy, your DH continues to be in my thoughts and prayers.....he has had such a rough time of it.

 

[mrsrocster]

Hi Kathy, you and your DH continue to be in my thoughts and prayers. The news about this PET scan is good, sorry to hear though that he has these painful spasms each day, hopefully they will become less and less very soon!

Michelle

 

[BKelley]

Kathy hugs to you and your hubby. Positive energy is sent your way

 

[maw]

You have been in my mind and good thoughts so glad to hear the latest repprt. Just hang in there and do what you can but don't forget to take care of Kathy

 

[debowah]

Thanks for taking the time to keep us updated. Waiting is always so difficult. Hopefully these spasms will ease and you can have an enjoyable summer. Prayers continue, of course.

 

[Beryl]

Well some good news is always welcome! Hugs, prayers and positive thoughts coming your way from me too!

 

[korinalacount]

You 2 are wonders,you just keep up with whatever life throws at you,God Bless you!

 

[H2O babe]

I check here frequently for updates from you. My best to Mike and to you and the rest of the family.

K.

 

[Corky]

Kathy - You both have been on such a long road with this, and it is good to read the news that his condition is improving and I continue to send both of you good thoughts. =hug

 

[audrey]

prayers still coming your way thanks for keeping us imformed

 

[Karry]

Kathy, you and your DH are in my thoughts DAILY (really!) Positive thoughts and prayers continue. =hug =hug

 

[kitten]

Dear Kathy-I can't add to what has already been said, except thank you for keeping us up-dated on DH's progress. It's been a long and traveled road you've both been on, but please remember, you have friends here who are traveling the road with you. I will be keeping you both in my thoughts & prayers, and please, check-in with us when time allows, that's what we are here for and what this site was created for, your not alone!:thumb :angel

 

[Cruise cutie]

Hugs and prayers to you Kathy and for Mike..may it just stay better, and get diagnosed with dealable issues..make sure you keep time for you built in here..keep us updated too..Joanne

 

[Mgram]

Kathy......nice to see a little good news for the 2 of you. I don't blame you for withholding the Remicade. I know someone who developed a rare cancer while being treated with it for Crohn's. Each case is different, but the stuff sure scares me. You have a wonderful team of doctors on the case.