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Post by Jedimom/Cor-Al Gelkar on Feb 18, 2005 22:48:52 GMT -5
Update to the update:
Right now Nerf is running a fever. Double-checked with the doctor on duty at U of M just to be sure and she said to keep an eye on him. If it persists or gets higher, then we're to take him to the ER. <sigh> Fever is pretty common though it seems for a reaction
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Post by Leda EmBorr on Feb 19, 2005 1:52:44 GMT -5
...and he wanted to drive himself there? Stay cheery...
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Post by Jedimom/Cor-Al Gelkar on Feb 19, 2005 7:27:38 GMT -5
He's stubborn... too stubborn sometimes.
This morning he seems pretty cool. He's still sleeping though so I don't want to wake him and take his temp. I think he's okay
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Post by Jedimom/Cor-Al Gelkar on Feb 26, 2005 20:22:15 GMT -5
Mark went for his second treatment today. This time we were in the Cancer Center and it was a much nicer set-up. I had a chair right across from him and it was much more spacious and brighter. There were 15 chairs in his section and at least two more other sections of chairs and then rooms with beds for people who had to have their urine monitored during treatments. It went a lot quicker this time, about 3 ½ hours compared to 7 last time. (They told us to expect about 5-6 hours for these subsequent visits, so this was a pleasant surprise). A problem came up though when we got home. I had written to Mark’s rheumatologist earlier in the week to let him know about the fever Mark had. Today he wrote back. But the thing is, Mark was already hooked up the his IV by the time the doctor even wrote, and of course we did not get it until we got back. “Carol, I will be out of town through 2/28. Please make sure that you speak w/ Joyce directly so that she may connect you w/ a rheumatologist to discuss these issues on a more urgent/ appropriate time. I suspect that Marks reaction may be infusion related, and occasionally we may premedicate pts. However, other causes of fever and head ache, such as infection, should be considered and should be brought u p immediately to our attention. I will be back to wk on 2/29 and we should discuss future infusions at that time. In the meantime , I would hold off next infusion, and please make sure you speak w/ an MD( either Mark's PCP or a rheumatologist at UM) if Mark is experiencing these symptoms. Regards, V Ognenovski >>> “
“ Jedi Mom <jedimomg@yahoo.com> 02/22/05 3:57 PM >>> re: Mark Gilbert CPI 2853 4334 Dr. Ognenovski: As you are probably well aware, Mark had his first infusion of Rituxan this past Friday. He ran 102 degree fever that night and had a few chills the next day. However, he has been complaining of horrible headaches since the infusion. These are worse than a normal headache and have only bothered him since Friday. Since the sheet the nurses gave us at the end of his infusion stated to talk with our physician if he had any headaches afterward, I am writing to you. Also I wanted to let you know that he has also been complaining of moderate to severe kidney pain. This has been going on for about a month now, well before the Rituxan. However, he says the pain is constant, but not always severe. It does hit him quite hard at times, however. The pain seems to be in both sides. Thank you for your consideration. "
So now I have to wonder if we did the right thing. I am under the impression however, that he doctor thinks that Mark’s fever is still active when it was only the first night. Mark still does have headaches, however. Overall, he has not been feeling well this week. He lost 5 pounds since the last visit. He has been somewhat nauseous all week too. I don’t know, though, if that is because of the Rituxan or because of the Isordil (nitroglycerin type) his cardiologist put him on.
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JediKai
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Post by JediKai on Feb 27, 2005 11:47:22 GMT -5
Yikes. Hope all is well, in spite of that.
Gets me thinking about using email for medical communication. Not so good, eh? My own medical clinic has a secure email option. My hospital/agency (VA) is working on setting that up. But if it's an important treatment decision, phone is still best. Though it sounds like the MD was gone, so email may have been the only way to stay connected.
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Mon-Jas Charan
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Post by Mon-Jas Charan on Feb 27, 2005 20:17:37 GMT -5
[glow=red,2,300]
Please keep us posted ... We are all keeping you and he in our thoughts
[/glow]
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Post by Jedimom/Cor-Al Gelkar on Feb 27, 2005 21:22:33 GMT -5
I actually email him quite often. Its easiest for me since we are such a long distance away. However, if it is something urgent I do call. However, sometimes it is hard to get through the front desk and his nurses for him to actually get the message. Email has been convenient.
BTW, Nerf is feeling pretty good today. Not 100% but much better than he has been the last few days.
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JediKai
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Post by JediKai on Feb 28, 2005 1:49:50 GMT -5
I actually meant that he maybe should have called you if he was advising against having the treatment.
Again, I keep you and Nerf in my meditations and hope for healing.
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Post by Jedimom/Cor-Al Gelkar on Mar 2, 2005 8:20:34 GMT -5
Finally got a hold of Mark's rheumatologist. He tends to agree with me that Mark seems to be getting worse. This week he will get blood work with his Rituxan treatment. Next week, immediately after his infusion, he has an appointment with his rheumatologist. They also want him to get an MRI of his brain. (He does have a history of white matter lesions in his brain). Mark still has not been feeling well. His cough has returned and he still feels nauseous and somewhat lethargic. He has flank pain (a history of kidney stones but allegedly not WG related) and nausea. His headache is still present, but not as severe as it was. The crusties he has been blowing out of his nose are the size of a quarter. Hopefully the blood work will show something.
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Post by JediMistressDragon on Mar 2, 2005 20:22:21 GMT -5
I'll keep him in my prayers. JMD
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Post by J'st-Peat on Mar 3, 2005 14:39:34 GMT -5
I just read your post, and I just wanted to say good luck. I moved back home last fall to care of my father, he had cancer in his neck and has undergone extensive radiation. I will certainy be ssaying prayers for you guys
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Post by Jedimom/Cor-Al Gelkar on Mar 6, 2005 9:03:31 GMT -5
Hello All Mark had his third infusion yesterday. Another long process. We were told earlier in the week that he was supposed to get blood work done this time. Earlier the nurse called and said she was going to mail down the requisition to us, but I said we were goin gto be leaving Friday night so we probably would not get it in time. She then said she would fax the req. up to the Cancer Center (why didn't she just do that in the first place?) Well, of course, the Cancer Center had not received the requisition. Luckily, they are quite experienced with things like that there, so she took some blood and paged down to the rheumy on call who was able to have his doctor call in. So that took about 45 minutes all told. Luckily we did not have to wait for the results so in order to start they were able to call down to the pharmacy to get his Rituxan. But that took a while too. Cancer Center was pretty busy, compared to the week before, especially for a Saturday. Anyways, Mark's labs came back and I was able to grab a copy of hem. Everything was normal except nitrogen (a little low), creatnine (a little low), glucsoe (a little high -- I keep telling him to lay off eh sweets, especially with Prednisone), absolute neutrophil (a little high), hemocrit (a little low) and reb blood count (a little low). I was surprised to see his WBC was normal. What really got me though was the Neutrophil percent from the Coulter machine was pretty high. I guess this still means his WG. Does anyone know more about this? Also his lymphocyte percentage from the Coulter machine was pretty low. Those were the only two that were really out of whack from the norms. Any ideas why? Anyways! Mark tolerated the Rituxan well, as he usually does. His blood pressure still ran a little high, though. One thing that happened earlier in the week that scares me: Mark had an "epsiode" where he had an extreme brain freeze (where he was eating a slurpee) and it was worse than ever experienced and even affected his vision. He still says his vision is bothering him since then. With the headaches he's beenhaving, this is a concern. He has an MRI set up for March 21, but I don't think he should wait that long.
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JediKai
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Post by JediKai on Mar 6, 2005 10:50:42 GMT -5
Hope all goes well and am keeping y'all in my thoughts.
Don't know about the rest, but you are certainly right about the Prednisone. Just taking that can bump someone into diabetes.
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Post by Jedimom/Cor-Al Gelkar on Mar 6, 2005 11:19:02 GMT -5
Yeah and he's been on it for 8 1/2 years.
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Post by Leda EmBorr on Apr 2, 2005 1:29:09 GMT -5
My husband had to take Prednisone for quite a while, he has Chrone's disease. Luckily it hasn't acted up for about 10 years now. Yeah I agree it's nasty stuff!
Just checking, Cor-Al... how is the Nerfherder doing?
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