Of Werewolves, Vampires, Leukine and the Like

[Kuanyin]

I recently returned from a trip through the Baltic and Eastern European countries. I don't know how many of you have visited Bulgaria, Romania, Croatia, Hungary and the Czech Republic but these are places that love their yogurt, baked breads, pastries and farm fresh eggs (I could go on about beer, wine, etc, but you get the point). I'm usually quite TAS'D about my diet: when it gets down to it, I eat to live not live to eat, as many “foodie's” seem to do nowadays, so I try to contain my animal appetites when away from home. However, in Bulgaria, for example, breakfast usually had available three kinds of yogurt; freshly baked bread made from different grains and one of my favorites, muesli soaked overnight in milk with plenty of fresh fruits. So my diet was high carb, high sugar lots of dairy and eggs (I love poached eggs).

When I returned to the U.S. It was just in time for a visit to the oncologist. I was more than nervous about this visit considering all of the excursions I had taken from my usual diet and thought that I would have to pay dearly for it in terms of PSA , HA1c cholesterol

(Oh, yes, I also sample a lot of cheese).

I had also been keeping up on the HealthUnlocked posts where I read a number of interesting posts regarding the immune system. Some people were taking Dukoral, and Rigvir (the ECHO-7 virus), others, “the Werewolves” as I refer to them, were howling about their ingesting canine medication and how effective it might be. I have always been prone to the “Vampires” (we actually visited Transylvania the home of Vlad the Impaler from whom Bram Stoker is said to have gotten his model, Dracula). I like the idea of having one's blood, drawn, then fortified and returned to one's body. I have always considered Provenge something like Norton's Virus Protection: it silently runs in the background doing its thing. I had previously asked my oncologist about Dukoral and Regvir, but since these drugs are only available in Europe and Canada, there wasn't much he could do. As to the canine meds, well....Rather than waiting for the inevitable, I asked him if there wasn't a way he knew that I could boost my immune system. I presently take no medications for Pca other than Avodart. He considered my question a minute and then answered “Leukine.” Since my white blood cell count, as far back as my records show, has always been low, sometimes out of range low, he thought he could probably get the medication for me.

As I understand it, Leukine delivers a granulocyte-macrophage colony-stimulating factor (GM-CSF) which is good for marshalling the troops to the tumor sites, but it generally doesn't weaponize them, not an optimal solution. What would be needed would be a Provenge booster which I found. I called Dendreon to speak with the chief pharmacist. At first, there was confusion over the study I cited: she wasn't familiar with it. However, I finally found out that Dendreon had had its own study of a booster for Provenge. Unfortunately, there were only 18 people in the trial and, even though the results were encouraging, Medicare would never pay for such a small study, considering that the cost for their booster is around $50,000. If I could get a guarantee that this would extend my life X-number of years, maybe we could follow Tom Selleck's advice a get a reverse mortgage home loan. In any case, unless there is someone in this forum who can loan me that amount at a very low rate of interest, that's not going to happen. However, the booster vaccine to which I was referring, pTVG-HP DNA Booster Vaccine, recently concluded its trial which appears to have been successful, but I don't think its currently available for prime time.

Questions:

1Anyone with Leukine experience?

2Any suggestions for ways to arm the troops?

Oh yeah, after all of that indulgence, my PSA went down!

[cesanon]

I had luekine. It didn't seem to help my cb4 t-Cell counts. Which was the intention.

It did seem to initiate some auto immune effects.

Myers put me on over the counter pepcid. It seemed to boost my t-cell counts to just above 200.

I continue to take pepcid.

[Kuanyin in reply to cesanon]

I am also concerned about "auto-immune" effects. However, chronic use of something like Pepcid does also have its downside: can be hard on kidneys. Also, there could be an issue with the assimilation of food, seeing that the medication reduces stomach acid. There is no free lunch! Allergy medications also are histamine reducers (I am assuming that it is the histamine suppression that contributes to boosting white blood cell count.)

[cesanon in reply to Kuanyin]

Hmmm in what way is pepcid hard on the kidneys?

[curious-mind1 in reply to cesanon]

I could be wrong, but I think it is Proton Pump Inhibitor long-term use that is harder on the kidneys, rather than famotadine (Pepcid). Forget the exact paper I read, I think it was a recent paper studying the impact of long-term use of Pepcid with aspirin to see if it reduced the risk of Barrett's Syndrome progressing to esophageal cancer (it did reduce the risk).

Arthur

[cesanon in reply to curious-mind1]

Yeah Proton Pump Inhibitor is not good for you. I forget why, but I remember that.

Pepcid is not a PPI. After reading what you said, I went and researched the side effects of pepcid. It seems to have a lot of them. But they seem to be not so bad and not so common.

[pjoshea13 in reply to curious-mind1]

Hi Arthur,

Not a PPI, but an H2 inhibitor. It inhibits acid secretion by blocking the action of histamine in the stomach.

-Patrick

[Kuanyin in reply to cesanon]

JAMA Intern Med. 2016 Feb;176(2):238-46. doi: 10.1001/jamainternmed.2015.7193.

Proton Pump Inhibitor Use and the Risk of Chronic Kidney Disease.

Lazarus B1, Chen Y2, Wilson FP3, Sang Y2, Chang AR4, Coresh J5, Grams ME5.

Among 10,482 participants in the Atherosclerosis Risk in Communities study, the mean (SD) age was 63.0 (5.6) years, and 43.9% were male. Compared with nonusers, PPI users were more often of white race, obese, and taking antihypertensive medication. Proton pump inhibitor use was associated with incident CKD in unadjusted analysis (hazard ratio [HR], 1.45; 95% CI, 1.11-1.90); in analysis adjusted for demographic, socioeconomic, and clinical variables (HR, 1.50; 95% CI, 1.14-1.96); and in analysis with PPI ever use modeled as a time-varying variable (adjusted HR, 1.35; 95% CI, 1.17-1.55). The association persisted when baseline PPI users were compared directly with H2 receptor antagonist users (adjusted HR, 1.39; 95% CI, 1.01-1.91) and with propensity score-matched nonusers (HR, 1.76; 95% CI, 1.13-2.74). In the Geisinger Health System replication cohort, PPI use was associated with CKD in all analyses, including a time-varying new-user design (adjusted HR, 1.24; 95% CI, 1.20-1.28). Twice-daily PPI dosing (adjusted HR, 1.46; 95% CI, 1.28-1.67) was associated with a higher risk than once-daily dosing (adjusted HR, 1.15; 95% CI, 1.09-1.21).

CONCLUSIONS AND RELEVANCE:

Proton pump inhibitor use is associated with a higher risk of incident CKD. Future research should evaluate whether limiting PPI use reduces the incidence of CKD.

[pjoshea13 in reply to Kuanyin]

"The link to kidney disease did not appear when the researchers looked at medications such as Zantac and Pepcid, which combat heartburn in a different way, by blocking histamine production in the cells that line the stomach."

washingtonpost.com/news/to-...

-Patrick

[larry_dammit]

Be careful with the Avadart, I was on it for a number of years. Among other things it artificially lowers your PSA. I found myself with Stage 4 and Mets when the PSA finally went wild.

[Kuanyin in reply to larry_dammit]

Same thing happened to me. This is why I get PET/CT scans. The oncologist, the physician monitoring my color doppler scan and I were caught flat-footed.

[EdBar]

Yes, after radiation to my prostate and several nodes and then having chemo per CHAARTED, my immune system was left pretty devastated. Dr. Myers started me on daily shots of Leukine as well famotadine (Pepcid) to boost my immune system. If I recall, I was taking it daily for a couple of weeks every 6 weeks along with Claritin for bone pain. It did have some side effects, mostly fatigue, body aches etc. I did this for a year or so until SE’s got to be too much and he was fearful of autoimmune problems kicking in, as he said “you want to come close to but not cross that line”. It has seemed to help my immune system although there are still some abnormalities that will likely never go away due to treatment.

Ed

[Kuanyin in reply to EdBar]

Thanks. It's the "abnormalities" that concern me. I'm just wondering whether or not it is useful to begin.

[EdBar in reply to Kuanyin]

Some of those abnormalities are due to zapping lymph nodes, others from damage to bone marrow from radiation and chemo. I feel like the Leukine helped, overall my immune system is back from the brink. It seems that at this point in time all the things Myers had me do are still working especially given my starting point over 5 years ago.

[curious-mind1 in reply to EdBar]

EdBar , just curious, did you take Claritin to help with bone pain? That's an interesting re-purposing of that drug.

Arthur

[EdBar in reply to curious-mind1]

Yes I was first told to use it by the nurses administering me chemo, I was given Neulasta since my WBC count had dropped so low. Neulasta causes quite a bit of bone pain because it over stimulates your bone marrow. It worked like a charm. Leukine is like a weaker version of Neulasta but also can cause bone pain and Myers recommended using it as well. I’m not sure they know how it works it just does. Just standard 24 hr Claritin, go figure.

Ed

[vandy69]

Dr. Snuffy Myers had me injecting Leukine daily for several years with no specific SEs I can recall. It made traveling exciting since Leukine has to be refrigerated and reconstituted so I had a cooler and a supply of syringes and sterile water!

Best wishes. Never Give In,

Mark, Atlanta

[Kuanyin in reply to vandy69]

I'm assuming that the traveling didn't include abroad! Great that there were no SE, however, how useful was the medication in terms of results? Was it worthwhile, considering the effort and bother?

[vandy69 in reply to Kuanyin]

We did travel internationally and only had a temporary problem in Turkey.

As to effectiveness, Myers had me on so many other things (Zytiga, High Dose Ketoconazole, Xtandi) that may have overlapped Leukine, that is difficult to isolate Leukine. All I can say is that I was diagnosed with Stage 4 PCa, with numerous mets in pelvis and abdomen lymph nodes in August 2012 and I am still here!

Mark, Atlanta

[PaulC2 in reply to Kuanyin]

I self-injected sargramostim(Leukine) daily during a period of time I traveled abroad in Europe. The medication kept cool in an insulated chill-pouch tucked into a polystyrene box; the syringes were a problem only when I ran out and purchased a much larger gauge. On the plus side, TSA and airlines in America were deferential, shortening much of the unnecessary queuing and delay that characterizes air travel in the U.S.

I was taking Leukine as a booster for cyclophosphamide(Cytoxan).

My experience with Leukine was much as others have described it: No noticeable positive effect, and no particular side effects, other than the psychological ones of toting around needles and self-injecting every day.

In my case, it definitely was not worth the effort and bother, except for the knowledge gained. I might try it again if future circumstances steer me towards Provenge or Yervoy and my oncologist concurs.

[Kuanyin in reply to PaulC2]

Paul,

Thanks for sharing your experience. I really admire the way in which you handled the matter overcoming the inconvenience, possible hygiene and sanitation problems and all of the other problems that arise when traveling outside of the country. You're a cool head!

[abmicro]

I did Leukine in 2008 and got a good response from it. I was on a Kaiser HMO and had an excellent doctor (sadly retired) who went along with the prescription recommendation from Dr Charles E Meyers (also retired) so I was lucky to get it almost free $5 copay. I did over $50,000 worth of Leukine. I was combining it with the patch and some Ketoconozale. One of my longest remissions and got down to a PSA of 0.10.

[abmicro in reply to abmicro]

Also note that I previously tried Ketoconozale alone and it did not work. I also tried another drug alone, an estrogen called megace and it slowed things down, but mostly did not work either--it made me gain a lot of weight. It took a COMBINATION of the 3 drugs to work. This supports the general fact that combos work better than 1 drug alone.

The Leukine cleaned up a lot of other problems. Kept me infection free and free of colds and flu for the entire 2 years of my remission. After 8 months of Leukine, he dropped me to a maintenance dose Leukine 2 weeks on 2 weeks off. Excellent response to Leukine. Wish I could do it again, but stuff is expensive and nobody will cover it now.

[Kuanyin]

Thanks for the reply. As an aside, I too was on Ketoconazole and had a good remission. From what you write, the effects of Leukine are not permanent. I mean, in addition to working well with the ADT, most importantly of course, how did it affect your white blood cell count, or do you not recall? Amazing that Kaiser back in 2008 would provide such a prescription.

[j-o-h-n]

Dracula..... "I vant to suck your blood before it clots"....

Good Luck, Good Health and Good Humor.

j-o-h-n Monday 06/17/2019 2:55 PM DST