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Ed Caffrey's Workshop Talk to Ed Caffrey ... The Montana Bladesmith! Tips, tricks and more from an ABS Mastersmith.

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Old 07-08-2013, 02:36 PM
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Ed Caffrey Ed Caffrey is offline
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The report from the Mayo Clinic

This was posted on my Mayo Clinic website on 3 Jul. It sounds to me like they are still guessing, and it looks like they want to use a cancer drug on me. I did some research on the drug, and to me, it seems like the cure is worse then the diease!

Here's the text of the Mayo Clinic report:

Quote:
IMPRESSION/REPORT/PLAN
The final results are now complete. Lab tests from June 12, 2013, show a normal CBC and normal differential. Sed
rate is not elevated. Chemistries, including LDH, are within normal limits. Lipase is elevated at 172, but serum
amylase is normal. Serum protein electrophoresis shows polyclonal hypergammaglobulinemia. Immunoglobulin
levels of IgA, IgM, and total IgG are all within normal limits. TSH is normal. IgG-1 and IgG-3 are slightly elevated
but IgG-4 is not elevated. Peripheral blood flow cytometry is normal. Pathology results on the bone marrow from
May 3, 2013, were normal. The final pathology report is not complete; however, I spoke with the pathologist
yesterday who reviewed the result. Essentially this is felt to still represent nodular lymphoid hyperplasia involving
the lungs. There was no evidence of MALT lymphoma and the IgG-4 staining was not increased. Therefore, this
does not appear to be IgG-4 disease.
The PET scan done on June 14, 2013, reveals many pulmonary nodules with FDG avidity, although technically
indeterminate and certainly could be due to nodular lymphoid hyperplasia based on the prior biopsies. There was
also a metabolically active indeterminate right thyroid nodule and thyroid ultrasound was recommended. The
outside CT scan was also reviewed. Those are scans from February 22, 2011, October 12, 2012, and April 15, 2013.
On the most recent scan it shows that several of the nodules have increased slightly in size compared to the October
2012 scans.
Thus, at present we are faced with whether we try and proceed with another biopsy or whether we do further
investigations. Overall, I think further biopsy will likely not give us an answer. The other question is whether a
pulmonary consultation would be beneficial, and I really do not think that would be. At this point, the only other
abnormality we are left with is an elevated lipase, and I wonder if his abdominal pain could be some mild
pancreatitis.
Despite the fact that we did not confirm IgG-4 disease, with the diagnosis of lymphoid hyperplasia it is essentially a
B-cell lymphoproliferative disorder, and therefore I think rituximab would still be a reasonable option for him to try.
I would try a four-week course of standard-dose induction rituximab at 375 mg/m2. I would then plan on a repeat
CT chest in four weeks. I would also recheck the amylase and lipase to see if those have normalized. If the CT scan
shows improvement, then at that point I would manage him expectantly. If there is a resurgence of these pulmonary
nodules, then certainly rituximab could be tried again. If, on the other hand, there is no improvement in the nodules
with the use of rituximab, then I think further investigation and assessment by Pulmonary would be a reasonable
approach.
DIAGNOSES
#1 B-cell lymphoproliferative disorder of the lungs with nodular lymphoid hyperplasia


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Old 07-08-2013, 03:00 PM
Jeremy Jeremy is offline
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Oh man, there are some $25.00 words in there.... Most of that was all foreign to me. Didn't look up the medication, but if it's like most that I see in commercials, having more side effects than what the original problem is just seems bizarre. I hope you can find something that helps you out, Ed.

Jeremy
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Old 07-08-2013, 04:32 PM
Kostoglotov Kostoglotov is offline
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Sorry to hear that Mayo wasn't able to give you a concrete answer

If you decide to go on the drugs, I hope the side effects aren't too severe
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Old 07-08-2013, 05:38 PM
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Good Luck Ed, keep us posted. Best wishes

Austin
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Old 07-08-2013, 07:47 PM
thales thales is offline
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That doctor knows about the side effects and risks involved with that treatment. Nevertheless, he recommends this treatment because he thinks that the disease is likely to get worse and end in an unpleasant death. Maybe you should get a second opinion, preferably from a physician that you know well.
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Old 07-08-2013, 08:03 PM
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Quote:
Originally Posted by thales View Post
That doctor knows about the side effects and risks involved with that treatment. Nevertheless, he recommends this treatment because he thinks that the disease is likely to get worse and end in an unpleasant death. Maybe you should get a second opinion, preferably from a physician that you know well.
I agree. Take the results with you and get a second opinion.

Good luck, Ed.
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Old 07-08-2013, 09:41 PM
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That's a pretty exotic drug they recommend giving you!

I would suggest you search to see if there are any studies going on with respect to this diagnosis. It may put you in contact with the most cutting-edge work on this subject.

Having something rare is generally bad for the patient, but the research folks eat it up. It also requires that the patient drive the treatment, as the doctors will not even attempt to get attached to the patient.

Please know that you are in our prayers, amigo.


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Old 07-09-2013, 03:47 PM
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Wish you the best, whatever you decide to do Ed.


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Old 07-25-2013, 08:25 AM
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Finally got a call from the Mayo Doc. She's also spoken with my Primary Doc, and the Oncologist. They are working on my referral for treatment. I go to see my Primary on 1 Aug, and to the Oncologist to start the treatments on 5 Aug. Even though I made mention about all the warnings this drug carries, after speaking with all the Docs involved, the say that it's the best option they can offer. At this point I've felt terrible for a year and a half.....and am ready to try anything if it will help me. Supposedly the treat consists of an "infusion" via I.V. once a week for four weeks, then another CT to see if theres any improvement with my lungs. I'll keep things updated if I'm able.


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Old 07-25-2013, 10:35 AM
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Good Luck Ed


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Old 08-02-2013, 07:58 AM
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Had an appointment with my Primary Doc yesterday. Late last evening I got a call from him....they did bloodwork on me, and my lipase is over 800 (normal is around 80). He says I have severe pancreatitus....DUH! He's consulting with another Doc, and is suppose to be calling me back today....he says the treatment for this condition is usually hospitalization for 3-5 days, with no food, and a couple of IVs stuck in me. He made is very clear that if I get to hurtin too badly, to get myself to the ER. If he calls back today, I'm just gona tell him to get me in the hospital, and get this thing fixed!


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Old 08-02-2013, 08:43 AM
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Right on, get it fixed! Best wishes.
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Old 08-02-2013, 10:22 AM
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You and Cindy are always in our prayers.

J


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Old 08-02-2013, 02:18 PM
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I can't remember if you said that you were a drinker or not but don't even think about having a beer or you will pay for it big time. Take care of yourself. If I was hurting as bad as that can hurt and the doc told me three days in bed with IV's I'd say: "let's get it done".

Doug


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Old 08-02-2013, 02:20 PM
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Best of luck to you Ed. Hope they are able to get you back on your feet soon. You and Cindy are in our prayers.


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