Treatment update

[Canoehead]

I’ve been posting here for about six months, but I am always uncomfortable about posting personal updates. I wonder whether I am bragging, whining, boring people or some combination of the above. Regardless, I enjoy reading the experiences of others, both positive and negative. I personally think that understanding both the good and bad experiences of our brothers is more valuable and practical than arguing about statistics we cannot control. So here goes.

Age 68 with no other ailments. Diagnosed 9 months ago. Gleason 8, large tumor in the pelvis, pelvic lymph nodes involved, 2 Mets in pelvis, one on a rib. PSA 36. Treated with Firmagon, Xgeva, Casodex, Prednisone and Docetaxel. Fingers still numb and fingernails a mess from the Chemo. When Chemo ended, switched to Lupron and Zytiga. PSA went untetectable before the end of Chemo and has remained that way. Scans look as clean as they can. Doing IMRT now, 28 sessions on entire pelvis and 15 on the prostate. Severe diarrhea from the radiation. Every day on the one hour drive to radiation I stress about having a full bladder and an empty bowel. Best medical advice I got in the last two weeks was not to get too far from a toilet.

But the possible pot of gold at the end of this rainbow is that Doctors are calling my cancer oligometastatic.

I went to Vegan diet when diagnosed but have added clean beef and fish back in. Sort of moving to Paleo now. I drink socially 2x/week. I take Metformin and some supplements. I have not been diligent about exercise and should lose 30 lbs. I work half time at a sedentary, but high stress job. Hot flashes are a nuisance, but I can live with those. Some Fatigue is a constant. My mind is still sharp, but not all the time, as I have periodis where it is very hard for me to focus. I did take a 3 mile walk at our home in the mountains today. It has a modest elevation change, and I finished in 60 minutes. Two years ago I did the same walk in 48 minutes.

I have not had depression, but the truth is that quality of life is somewhat impaired. But i am alive, pain free, and able to enjoy most things I once did. I have “come out” as a cancer patient, and shared my story with my workplace with a view to helping others. We’ve been dealt a bad nand, but happiness requires us to turn negatives into positives, so i’m Now all about helping others. Sounds trite, but it keeps us from feeling sorry for ourselves.

Lastly, my first MO told me I had 4 years. I found another MO.

God bless all of you, my brothers.

[Canoehead]

I forgot to mention that I am dealing now with slightly below normal liver enzymes and hemoglobin, both of which seem more concerning to me than to my doctors.

[Grumpyswife]

You are not bragging and you’ve got your bases covered. Thanks for sharing.

My husband would tell you to keep working as long as possible as he misses that dearly.

I would love to get him on Metformin but turned down from two different MOs now but I am not giving up.

[mcp1941 in reply to Grumpyswife]

Your PCP may be more amenable to writing script for Metformin

[CalBear74 in reply to Grumpyswife]

The natural molecular equivalent to Metformin is the berberine molecule. I take 4 berberine capsules with each meal. My A1C dropped and my PCP was pleased. I haven't mentioned it to my urologist or my MO. They know I take many natural supplements and they have documented them but said nothing about changing anything I'm doing.

vitacost.com/solaray-berber...

(I am a 76 year old vegan, G8, and I have been on Lupron since being diagnosed in 2012. At one time I took Casodex also, but my FL urologist dropped that when we moved here in 2016. Last time I was in his office in March my PSA was 0.06, same as Sept. 2017.)

[jdm3]

Thanks for the update. Keep fighting the good fight. Sounds like you are doing well. And, go get some exercise! It makes a huge difference.

[Dan59]

That is an excellent response, How high is your alt and ast? How low for the hemoglobin, My HG has been slipping since starting 2nd line chemo after extensive pelvic Radioation My current hg is 9.1 so mildly anemic, they do a hg transfusion at 8.0, My MO says it is not a big deal to get a bag of blood if you need it. Sounds like you have found a way to stablize your liver numbers. And Congrats on the response to treatment and great attitude.

[Canoehead in reply to Dan59]

Alt is 79, ast is 42. Hg is 11.8. I talked my MO into giving me a script for a statin (Lipitor), but he’s asked me not to start taking it until liver numbers are normal. I also talked to him about Avodart, and he felt that adding that to Lupron and Zytiga would be overkill.

[leswell]

Thanks for this update which was neither boring nor trite but balanced, sane, and hopeful.

We’re sorry about those chemo and radiation side effects but thrilled about your PSA being undetectable and about your oligometastatic classification. To top it off with walk in the mountains must have been near bliss. Rejoicing with you. Mrs. S

[Canoehead in reply to leswell]

Thanks so much for those positive thoughts. We all have to take a glass half full approach to keep our sanity, and while things look pretty good today, I take nothing in the future for granted. The truth is that every time I have blood work done I am uneasy until I see those PSA results. When I got the phone call from my radiation oncologist telling me that my PET scan looked clean and what he thought they could do, my wife and I were at a casino lounge in Las Vegas. We then laughed, cried, thanked God and went out for a wonderful, expensive dinner that broke all the dietary rules I had set for myself after I was first diagnosed. Live every day to the fullest.

[Schwah]

Good work my friend. Never fear posting good or bad news. We love the food and commiserate with the bad. Now get yourself into the fricken gym and start resistance training. It will help you lose weight, and feel much better. Promise. Higher a trainer even if it’s for one session to teach you the right workout. But should emphasize weights to offset the lupron.

Schwah

[Hazard]

Thanks for sharing this. It's great that you have been able to get PSA down to undetectable levels. Sounds like you have a good plan and it's working.

I recall when I had IMRT and I can relate to your situation. I had only 30 min drive home and I had every public toilet mapped out. Had to stop at least twice every day. But stick with it and keep fighting.

[WayneSC in reply to Hazard]

Being retired helped immensely with my radiation. I arrived an hour early and remained :30 after my appointment.

[leo2634]

Great news to hear. If you can walk that mountain then you should try to make it a daily routine or at least cut that walk in half and try it every day. I was never one for Excersising but walking seems to clear my mind of all the negative thoughts we now face. I enjoy the sights and sounds of my area and people are always friendly when encountered. Keep on walking that mountain my friend and never give up never surrender. Leo

[greatjohn]

Great news. Enjoy!

John

[lincolnj8]

I'm about the same age as you (67), also diagnosed 9 months ago. On Lupron, Zytiga and prednisone. Oscal twice a day. MO frowned when I mentioned alcohol. Never a problem but maybe hard on the liver with the meds added in. Psa under 1, was over 800 9 months ago. Hemoglobin went from low 6's to high 12's. Phosphate number went down to 450's, was over 3000 ) MO said that is reference to the bones producing blood, not the liver. Said liver enzymes were normal. Like you, I was reluctant to post personal info, but was glad to get info and advice from others in the same boat as me. Thank you for your post. Also, guess that I'm not the only one that misses working. In my line of work, industrial maintenance, don't know if I could do 6 days a week anymore. My mind says yes, but I get tired after physically doing anything after 4-5 hours. Oh well. By the way, walking 4 hours is amazing.

[msnik]

Thank you for your post. not boring, not bragging... You sound like you are doing well in body and spirit.

Good luck to you.

[larry_dammit]

Great to hear from you, no your not bragging. The more we talk about this monster the more attention we get for research. 2 years tomorrow stage 4 w/ Mets on spine,ribs and lymph nodes. Doctor told me the same story 50/50 chance of 5 years. Going to prove him wrong Fight the good Fight

[Litlerny]

Always good to hear from you. It sounds like you are doing very well. Keep it up!

I’m 4 1/2 months past finishing chemo. Still have some minor neuropathy in my right thumb and 2 toes on my left foot, but it’s gradually disappearing. My “old” nails are still brittle, but new, healthy nail tissue is gradually replacing it. I lost a lot of (but not all of) my hair. It’s starting to grow back and fill in now.

Life is good.

[leswell]

Thanks again, this time for the joyful image of the two of you. I confess we break dietary rules just about daily. Tomorrow at 9 a.m. is Les’s first blood draw in three months, and he’s now in his third month of Zytiga. Uneasy puts it mildly. Yesterday, a kind neighbor stopped by with a fair price to remove two old Honeygold apple trees which will relieve us of the duty to pick hundreds of worm-eaten apples off the ground. Loss of wonderful applesauce though. Slowly letting go of some things, but no apartment for us yet. Next job for me is to locate a self-propelled sickle-bar/scythe for rent. Also time to administer the Zytiga + you-know-what after our low fat breakfast. Go well. Leswell and spouse

[Hidden]

Hello Canoehead,

I'm new to the group and love hearing about each and every story.....the good, the bad and even the ugly. I noticed people talking about adding Metformin to the "mix" as part of ADT. How does this help? Im going with my dad to his MedOnc visit this Thursday. CT and biopsy have been done........we are waiting on the treatment plan. I want to ask the doctor about ANYTHING that can be added to his treatment that might help. I have two friends with diabetes who were on Metformin that had to discontinue because it caused terrible diarrhea. I guess that can be a side affect for some. I'm uneducated as to how it helps with PCa. This forum is a wonderful place for learning!

Linda

[Canoehead in reply to Hidden]

I’m not a science guy, but as I understand it, cancer cells have a much higher demand for glucose than normal cells. Metformin, which is a frontline treatment for type 2 diabetes, reduces blood glucose. Metformin has been around for 50 years, is generally safe, well tolerated and inexpensive. There is plenty of retrospective data showing an inverse correlation between Metformin use and PCa rates. There are also plenty of people now who are touting Metformin as a wonder drug with wide ranging health benefits. My best friend is a surgeon, and after I talked to him, over a beer, about Metformin, he did some research and wrote a script for himself as well as for me.

[wa64hoos]

I am being tested but not yet diagnosed for pca. My 4k and phi blood tests are

suspicious and so I am waiting on the results of a mri scan I had a week ago. My

PSA is normal (3.6) but the dre exam is suspicious ( two urologists differ on whether

it is normal or abnormal) My question is your PSA result- was it the first in a series

of screenings that came with your yearly health check ups. Another words, did you not

have regular screenings. I am 75 and so I have the tests every year. Your PSA seems

high for a person that has regular screenings with their check ups every year.

My best to you.

[Canoehead in reply to wa64hoos]

I was self employed and shunned doctors, figuring what I didn’t know wouldn’t hurt me. Then I went to work for a friend who got elected to public office, and the elevated PSA showed up at a routine health screening. Until then I had convinced myself that my pain when walking was from lumbar disc compression and my weaker, more frequent urination was from BPE, which is what a general practitioner had diagnosed at my last physical 5 years earlier. In retrospect, not very smart.

[Hidden in reply to wa64hoos]

My PSA was a 'normal' 2.7 but the DRE showed uneven firmness one side vs the other. That sent me to a urologist for a biopsy. Gleason 8. Scans were clear.

[wa64hoos in reply to Hidden]

WSOPEDDIE: SORRY, I MADE A TYPO.

ALTHOUGH MY DRE WAS NORMAL

TO HIM MY 4k test was not good and

he recommended a biopsy when I

returned home from Florida. So, I

asked the first urologist if he would

order a pre-biopsy mri before

he performed a conventional biopsy

and he said yes. Next week I go in

for the result.I must admit your

posting was of special interest to me

with that low psa and high Gleason

along with your suspicious DRE exam

My 4k showed 50% chance of pca and

if I did it would be in the high risk group.I thank you for your posting.

[j-o-h-n]

I say BRAG your ass off.... you're entitled to. And or course...

Good Luck and Good Health.

j-o-h-n Monday 07/30/2018 1:07 PM EDT

[Hidden]

Thanks Canoehead-

I will add this to the things to discuss with MedOnc this week. I'm learning so much!

Linda

[Stickingaround1]

Canoehead, thanks for the post and for sharing your story. It is inspiring. For better or worse, that is precisely what we are here for. My story is very similar to yours. I was dx in Feb, 2017, and since at least August, 2017, my PSA has been undetectable. I also switched to mostly a vegan diet, and have incorporate wild caught cold water fish and grass fed and grass finished beef (vs just grass fed). Congratulations again on your favorable scans and PSA reading!

[Break60]

It’s the first time I ever heard anyone refer to oligomets as a pot of gold! Well put! I too am grateful to have ”only” oligomets! I guess I’m less ebullient because I never had anything more than oligomets , knock on wood.

Keep on truckin brother!

Bob