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Onc. scheduled early CT on Dad


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I called the oncologist office yesterday, explained my concerns about dad. He sleeps ALOT, still barely eats, is constipated, and is having alot of pain in the stomach and back...and in the past few days has developed a REALLY TERRIBLE cough. I told the nurse pract. that I was very worried. She said that she could get a perscription for the pain, and that the meds to increase his appetite could take a week or so to work...I told her that I believed it was time for a CT scan, and that I really wanted this checked out. She said shed talk to the DR. and call me right back. Fifteen min later she called back and said that the Dr. agreed with me and scheduled a CT scan of the pelvic area, chest and abdomen. It isn't until Next thursday, but the radiology dept said we should call every day to check for cancellations.

I know that all of this could be from the stopping the steriods, you don't eat and it affects how your body functions and can cause pain...but seeing my dad tells me it is more. He looks good, but he is so tired, and he is getting fed up with feeling so badly. Swears that if he ever needed to go back on steriods, if he ever has brain mets again, he will refuse. He hated how they made him feel and that the affects have lingered for so long.

Today my parents went to price club and dad needed to sit down after walking from the car to the store. Then he got up and got 1 item and told my mom he was going to wait for her in the car. He was so short winded and fatigued.

Its like he is deteriorating so quick right before our eyes. Although it could be the affects from not having an apetite (again, this is very common after stopping steriods), just the knowledge that the cancer may be doing its job on him is absolutely terrifying!

The thing is, he was just at the onc. office last week and his lungs sounded great! Now this cough has him where he can't even talk. He sounds like me, I get this nasal drip during allergy season and all I do is cough. He has allergies, but they usually just make him sneeze alot. The cough has developed over that past few days.

My mom called me up crying. She is frightened. She feels so bad for him, seeing him suffer like this. And he is so strong about it. I swear if you were to ask him how he was, hed say, "not bad" or "pretty good".

OH, and get this, I mentioned in an earlier post that dad had a follow up with the neurologist for the most recent MRI to see how the tumors are re absorbing and check for any other mets. Well the appt. was LAST TUESDAY, and he never got to see the Doc. because of an emergency surgery. They were supposed to call my mom with the results...and havn't. I have called several times, and today when I called last I told the receptionist to please tell the doctor that I think it is dispicable that he would make someone wait for such important test results like this, and to be so uncaring as to not even return a phone call. I also told her that we understand that Dad is not his only patient, and don't expect him to stop an emergency surgery to call, but I DO expect a call by the end of that business day! I told her that my dads oncologist could just as easily schedule any follow up MRI's AND READ THEM and compare them to the past MRI's, and that this is what we would be doing from now on. While we were happy with the doctors medical expertese, the fact that he has neglected to have the respect to call my dad back was disgusting. To keep ANYONE waiting for results like this is inexcusable. And that the doctor is to call ME back, as I do not want him talking to my parents and upsetting them, regardless if the results were good or not.

At first my sister was annoyed with me for saying that I wouldn't be sending dad back there, but when I told her that I was completly calm and also threw in a compliment about the doctors medical expertese, and explained to my sister about how Dr. Gold found the mets in the first place, so why can't he figure out how things are going? HE CAN!! Then she said I was right. Besides, since dad would probably refuse any further treatment should he experience brain mets again, there was no point in making him go to this Dr. and wait and possibly never be seen or called. Its weird, the neurosergeon was SO NICE, and SO great with treatment and with talking to my dad. We really liked him.. I don't know what has happened that the treatment of his patient has deteriorated like this, its really mind boggeling. And frustrating.

Well, thats it for now. Thanks for the outlet, guys. Take care of yourselves and please know that you are all in my prayers and I think of you guys CONSTANTLY through the day. Prayers are always appreciated. Thanks again, take care, Deb

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Working as closely with your dad as you do Deb, you are THE one that quickly notices changes... Great job of doing the ground work to get the early CT... You are right, you could at the very least, be deserving of a phone call from your onc. I had that exact conversation Monday about an MRI of Cheryl's. Starting early in the morning making calls to get results and hearing every excuse in the book from the nurse, I finally told them that this relationship was starting off on the wrong foot if this is how we are to be treated. I also told them (his nurse) that those were our results, not the docs or the nurses or anybody elses and that maybe we need to look elsewhere for treament. She was shocked and basically said that was my prerogative. Fifteen minutes later we got the call with the results and was set up for wednesdays first chemo. Sheesh! Is this what it takes! They make it so much mre difficult than it has to be for sure!

Our thoughts and prayers are with you and your mother and of course, your dad.

_Jack and Cheryl

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Deb, I am praying that your Dad gets some relief from his symptoms soon. I hope the scans show nothing and it's just like you said, symptoms from coming off the steroids.

What a jerk that neuro doc is, good for you saying what you did. Sometimes I really think they forget they are dealing with humans. Hang in there, and know you've got lots of people praying for you guys.

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maybe I can give you some relief.

My momjust came off steroids 2 weeks ago. The first week got steadily worse. I could visible see her going down hill. She never ate. sleeping maybe an hour or two then being up. Could not leave the house for her legs would give out. Was soooooo way down in the dumps. Never could go more than 4 hours without pain meds. Had terrible terrible acid reflux.

OK our onc. who has his own cancer clinic where we live but is a teacher at Roswell Park in Buffalo. told us ITS NORMAL. Steroids are false energy boosters and even if he were to take them and then come off he would experiance the same things. He said it takes about 4 weeks total for steroids to not effect you anymore after you stop taking them. He told mom the first 2-3 weeks would be ugly and hard, but just trog through them and you know what up until today I thought he was talking out his a--. BUT this morning when i stopped at moms before work for my normal am stop. She had already made her bed and gotten dressed and started laundry. She says every day is a little better and although we still dont know if her full head rad worked yet cause the follow up MRI isn't till 7/7. and another chemo (6th) one is on 7/9 she says its slowly getting better.

Chemo makes her cough something awful and it takes about 1 week to wear off that too. I dont know why it just does.

give him a few days and then see. Hope this helped.

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Shellie, thank you for sharing your moms experience...unfortunatly Dad has been off the steriods since the beginning of April, although his onc. said that the effects could take months to work out. I am so glad that you found her feeling so much better this morning. I am glad for her AND for you.

Deanna, thank you for your prayers...I'm with you PRAYING HARD that all of this is from the steriods. I can't explain just how disappointed I am in the neuro Doc. He was so wonderful up until recently. Its like he's been transmorgified into one of "them", you know, those callous doctors that should be working in a lab, NOT with actual HUMAN BEINGS!

Jack and Cheryl, you are SO RIGHT, you have to be right up front with the medical professionals-they should have to meet the needs of their patients, not just medically, but emotionally. I think there should be regular inservices about PATIENTS: TREATING THEM WITH DIGNITY AND RESPECT. I mean, yes they work hard to earn that degree, but our loved ones-and ALL THE PATIENTS-have sure as hell earned the right to be treated with empathy...they should actually call the inservice "HOW TO TREAT YOUR PATIENTS ACCORDING TO THE GOLDEN RULE".

Katie, I was thinking as I read Ricks post about your father and posted a reply to it myself the same exact thing that you just noted...looks like once again you and I are facing some serious worries and WAITING (the excruciating part) with our dads. I have to remind dads neurologist just what an amazingly sweet man he is dealing with here, and he'd better keep in mind that thats MY DAD he's treating-he'd better do it right, or else "POW-RIGHT IN THE KISSER!!!" :twisted: I hope that your dad starts to feel better now that he's not dehydrated anymore. Being dehydrated can really do a number on you. OH, and, I want my daughters future grandfather-in-law at the wedding too!!!!! :lol::wink:

Take care, EVERYBODY, and thank you for the support... I know I'll sound like a drunk guy when I say this, but I really mean it "I LOVE YOU GUYS!!!" I am now mentally grabbing you each around the head and giving you noogies...ha ha ha. Take care, Deb

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