Not sure where I am headed with this discussion. Let's jyst say, I am cutting back on oxycotin, I am starting to feel, very unpleasantly like, a low grade pain in my lower spine which is worrying the shit out of me! But on the plus side, its Friday and a long weekend which I used to relish when I was working....time with family, at home, sleeping in, soccer or whatever. Now, I can;t even tell you the date or if its a holiday, expect for christmas or thanksgiving, which I love.
My question is, where will I be this christmas. I really now am starting think if this will be the last one or whether I will have others? Then I think about "hell on earth" and it evens out.
I hope the blog helps to decribe my symptoms and benefits and issues for those heading down my path in the future. Its important to share and trade information as a lot of this comes through word of mouth sometimes. So, pay attention!
I was led to believe, and did not think, I could do peptide receptor radionuclide therapy (PRRT) without damaging my one, not so good kidney. Fortunately, I discovered Dr Richard Baum @ Bad Berka, got some great support from my US MD;s I was seeing, and the rest is history, for the moment.
CAUTION
I want to make sure you understand, treatment and results are an individual thing, and the results for one does not necessarily mean you will have similar results-- better or worse.
As a matter of fact, upon reviewing PRRT study information results, one will see there is a % that have COMPLETE REMISSION (CR), or PARTIAL REMISSION (PR-DEFINED AS A SET % REDUCTION IS OVERALL TUMOR BURDEN), or STABLE DISEASE (SD) or PROGRESSIVE DISEASE (PD). THE STUDY RESULTS WILL BE BASED ON 100'S OF PEOPLE, AND THERE WILL BE A % FOR EACH POOL------SAME DRUG, SAME AMOUNT, SAME EVERYTHING; BUT DIFFERENT RESULTS.....that is why tis disease is such a complex PROBLEM, and a KILLER OF A DISEASE!
This are my results as a reference:
As noted, I have returned from a scan and Lu177 therapy to Bad Berka Clinic in Bad Berka, Germany under the direction of Dr Richard Baum. I did the scan on May 18 and therapy May 25 (blog postings starting May 15). My results, SYMPTOMATIC, VISUAL AND SERUM NUMBERS ARE VERY ENCOURAGING, AND I WANT TO SHARE THEM WITH YOU:
IMPORTANT BLOOD TESTS
June 26, 2009 (therapy on May 25, 2009)-
Previous to treatment my kidney creatinine was 1.7 or 1.8, Bun 18, WBC and RBC- low ranges, GFR in low 40's
Test Item----Test Range----Test Results @ 6/23/09
Creatinine .76-1.46====1.3 !!!! This was, over the last year at 1.7 to 1.8 monthly!!!!
Bun 7-25 ==== 12
WBC 3.8-10.8===== 4.1
RBC 4.20-5.80- ======4.33
GFR 60 or more======58! (was 40 in Bad Berka and previous counts at 40's!)
ALL other tests- complete metabloic panel and CBC were normal, except for absolute lymphocytes!
If you look at the results, there has been improvement, dramatic improvement, in serum test.
All tests where done by LAB CORP. Matter of fact, everything on the test was normal! The best blood test I have received since 2007 I believe!
As suspected, the tumors were chocking the vessels to the kidney and also the lymphatic vessels. Once the Lu177 treatment was administered, the radiation appears to have hit the tumors cells hard, causing them to decline, or die off, and therefor relieved the pressure on the organ and lymphatic system.
Hiroshima!!!!!
Medicines- before and after PRRT
I was drinking 3 liters of water and green tea, however; (I really didn't have much to take in as chemo or anti tumor therapy after Febr 2009, once I quit PAZOPANIB 800mg and stopped LAR30. I took the last LAR 30 in Febr 2009 injection, stopped that month (it was not helping me anyway and if you do PRRT you need to be off SANDO...fresh, hungry receptors is what you need!)
The advanced edema started 10 to 14 days AFTER I STOPPED PAZOPANIB drug.
I SUSPECT the drug was holding off the blood supply to the tumors, although some were growing, they were controlling them nevertheless.
I have read an article (which I will find it and post it for those on this drug), that once you are taken off, it takes 14-28 days for the blood flow to begin anew again, and the tumors to start growing aggressively again. This is what happened to me, exactly! Just a watch out and something to talk to your MD about...again I COULD HAVE BEEN A "ONE OFF". But I will also post the journal I read when I was researching what would happen when I knew I would come off the drug.
Cancer Therapy post Pazopanib & prior to PRRT:
My"cancer therapy" during those 4, very scary, lonely and painful months (Feb- May), were as follows (note, this is the most advanced medical country in the world ):
2 liters of water and green tea, hot tea at night, hot bath to soothe my leg pain and overall pain, at times anti inflammatory, black raspberry concentrate- I was not taking higher dosage due to COST- NO MONEY! :( I was taking 2 full tablespoons am and pm- total of 4. I was also taking multivitamins.
Finally, for prescription meds, I was taking 7, YES SEVEN, blood pressure meds, 2 diuretics, 60 mg oxycotin, prior pazopanib 800mg, stopped in Feb, SANDO LAR30, stopped in Febr, Ambien 10mg @night (even with that, I would not sleep), sometimes I would need to take Unisome also, and Klopien, 3 pills a day, for stress. Daily nausea, vomiting, pain (7 to 8), mental confusion, bathroom trips with help needed, constipation due to Oxycotin, pain and help to get upstairs in house, showers and daily living assistance from spouse.
Also, if I would had gotten my hands on a live rooster, I would have killed it, and eaten the
head raw, as recommended by my Cuban Afro Santeria Priest who instructed me get a live Rooster, eat the head and boil the feet and drink it with honey and ginger, it would "cure me" from the "evil spirits" creating those malo tumors in my body...Hey, when in desperate shape, one listens to wild and crazy ideas, no? (esto es un chiste!:)))
I didn't find a rooster, nor did I have the heart to kill it, nor do I really know how to kill it, nor do I want to eat a raw head or boil the feet so I did THE BEST THERAPY AROUND, PRRT- Lu177-instead!....
But if you have tired the "rooster head and feet" thing, please write me, and with your results? Send a picture with rooster picture also!
Medicines Post PRRT
I drink 3 liters of water and Arizona Green Tea with Honey (I stopped Black Raspberry, just dont have the money). I am also off LAR 30 (I never suffered from carincoid syndrome),
I take only 1, yes ONE, blood pressure pill (Lotriel, an ACE INHIBITOR, which is noted for helping the kidney), AMBIEM 10mg which I sleep like a baby now, and only 1 Klopien per day as needed (stress does not go away), plus 1 multivitamin. And now, 40mg of oxycotin, and trying to go down to zero. Although I am noting some pain in the back spine/bone where I have a metastasis when I sit in a chair for a while, which is worrisome. I may not be able to get off the drug altogether. But the GOAL IS TO STOP OXYCOTIN as I am on a "glidepath" to reduce the doseage (I have come down from 60mg to 40mg).
That's it, PRRT has helped me get off a number of meds which were by products of pazopanib (HPB) and drug action on the tumors reducing my edema to manageable levels!
As noted, this CURRENTLY is a wonder drug for me.
Appetite
I used to not have any appeitte at all, It was probably due to the pazopanib and the cancer, and drugs. Now, I am hungry again and enjoy eating again. I have not thrown up, with nausea, for a while. It was bad after treatment, but over time it diminished and I have not had any for 2 weeks. I am still tired but I am sleeping at 11pm and waking at 6 or 7am daily!
EDEMA
In addition, I was having extreme pain and edema. ALL OF THAT IS GONE OR WELL UNDER CONTROL NOW.
The best way is to demonstrate the feet (for you Susan!:)). The pic below are my feet before treatment:
Prior to PRRT treatment: Picture taken in April 2009. I weighed 230Lbs at my peak. Normally I weigh 195lbs!
Current:
The pictures below show the difference. The edema, although not totally gone, is generally REDUCED (some of it is due to one not so good kidney).
You see the difference. I can wear my shoes and it does not hurt to walk anymore (as much)! I weight 192lbs.
These pictures were taken BELOW on 6/7/09 days, about 12 days after LU177 treatment! I stopped taking lasix/diuretics a few days after the therapy.
Its one the visual demonstrations which I PRAY WILL correlate with Sept imaging of a "hoped for" tumor response to my treatment.
This one issue is very impressive, as I was in very BAD shape prior to the treatment.
Finally one of the most common side affects of PRRT-
1) bone marrow reduction- blood tests are normal for now, although I have not had a specific test for this
2) kidney function reduction- current blood test show IMPROVED FUNCTION from pre treatment days.
Summary
Today, July 2, 2009 I feel ok. I KNOW THIS THIS TREATMENT is temporary, PERHAPS.
I am still worried about the bone lesion very near my spinal cord and nerves, and I am also afraid as to when the therapy results will reverse and the damn tumors, and edema and company, will return with a vengeance. If you look at my tumor burden, I have an awful lot of tumors in my body for the therapy to "go after".
FINALLY, I am also afraid that Elvis is not dead, and is locked up in "area 52 or 57 in New Mexico"...PLUS I AM AFRAID FOR THE WELFARE OF "BUBBLES" THE MONKEY!
But for now, I have excellent blood results relative to the one kidney, and my edema is negligible, I love food again and not throwing up, which is a good thing and feeling great about my MD and quality of medical care!
But I do have some pain in my spine where the lesion is (when I sit on a chair for a while especially), so that is very worrisome, but it could be another reason for the pain. I also have significant memory issues which is very difficult as I forget things, and have gotten into 3 wrecks and 3 tickets within the couple of years. I did not have this prior to cancer. I am not sure where this comes from but from a extensive testing, I have been diagnosed with (advanced memory loss).
So this week, I will light up some firecrackers and fireworks, enjoy 4th (or party os the 3rd) of July, and celebrate my current independence day, from the effects of the damn tumors from hell, that were making me suffer and planning on killing me..... I still have "insurance from hell"problems, and the tumors, but I live today for another day, and in better shape than in May, although far from normal.
Stay healthy and enjoy life!
LU177 is the one!!!!!!!!
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