Hi Melody,

Thanks for the update and sorry to hear the news. I have some people I can ask that might know. They worked in oncology and did the seed implants on patients like Alan. Not sure if they will know about the AFTER meds, though, but I will ask. They worked in radiation oncology.

So glad you stay on top of things. It is better to seek out all the answers BEFORE and be prepared. Good for you.

Hi there. Thanks so much. I have heard from Glenn and he said there are other meds (other than Flomax) that they can give him.
And thanks for asking the people you know for some additional info on seed implantation.

Much much appreciated. Who knows? he might need it, he might not.

He doesn't seem to care. But I do. I want to know what I am facing.

I am now going down to sit on my landlord's couch and get hysterical watching her go all oooh and aaaaah while watching QVC.

lol

Thanks much, Melody

Hi everybody.

Just wanted to update you all on what's been happening to Alan.

His foot ulcer returned (because he neglected to change orthotocs in his custom molded shoes). He has had this foot ulcer on and off for years. We even went almost a full year without it recurring but this year, well, lots of things were happening.

I was doing what I always do, wash with saline solution, add solicite or medi-honey, and then put gauze and wrap. I would do this once a day. I knew it wasn't healing and I was right. We went to podiatrist last Tuesday who said "He needs Iodosorb". It's extremely pricey but we had no choice.

Since last Tuesday I've been applying it twice a day and changing his bandage. The doctor sent him home with a Cam Walker. He doesn't put his foot on the floor.

Next Tuesday we go back to the podiatrist and from there we will go to Hanger Clinic (the people who made his most recent custom molded shoes and orthotics) and they will cast him for yet another Crow Boot. We've been down this road almost 8 or so years ago. The Crow Boot from that time cannot be used again. His foot has changed.

So hopefully his insurance (because he's diabetic) will cover this Crow Boot and hopefully he will heal. I don't know how using a Cam Walker or a Crow Boot will help this ulcer heal. It's off loading. I know this. But he's still walking on his foot so how on earth can a foot ulcer heal (unless a person is COMPLETELY off his foot) when wearing these things.

He has had boots up the kazoo for the past 9 or so years. The Crow Boot was the one that, with continuous wear), his foot ulcer healed. That's when he began to wear custom shoes with custom orthotics. But he has to remember to change the orthotics every 4 months.

So we cross our fingers and toes and hope that this thing heals. In a few months, he will then have to go for a biopsy of his prostate.

I'm doing it all now. I don't know how i do this. But there is no one else so I have to do it. I'm just happy that because it's 47 degrees outside here in Brooklyn, NY, I have a landlord who gives plenty of heat. Thank god for that.

We have to be grateful for the little things in life.

And I am.

Good Night. Will update you after we go to podiatrist next week.

Mel

Thanks for the update.

Have they ever treated Alan with hyperbaric oxygen for his foot?

Wishing you and Alan the best and a quick improvement with his non-healing wound.

I will be looking forward to your next update.

Hi all.

Well we just endured the Blizzard of the century here in Brooklyn, NY. Alan has been going nowhere because there is no where for him to go. Usually I join my friends at Dunkin at night (I don't eat anything I just sit with them). It's my release. Anyway, his ulcer is all cleared up. The podiatrist wants him to continue to wear the crow boot until he is seen again. He can't be seen because we are housebound due to the snow. So he can't go anywhere. He wears an off loading shoe in the house. I check the foot every day. It's all healed. His next appointment is god only knows because the side of my house is like a mountain but I get to go out and go around the back into the driveway, then onto the street, then down to the avenue to shop if I need anything. Alan can't do any of this because of the narrow spacing, his need to use a rollator and he has no snow wear.

Now here's my next update. Alan took a PSA test 10 days ago and it was faxed to his urologist and we have an appt on Feb 3rd (if we are not snowbound of course). This appointment (as worded by the urologist). "Let's see what his PSA is and that will determine if he needs a biopsy of his prostate"

I just called our doctor and one of the girls there gave me the PSA number. It was 2.18. I forget what his previous PSA was but it was around that number.

I just texted his doctor and asked him the following question "Does a PSA number of 2.18 indicate that Alan will need a prostate biopsy?"

I am close to our doctor and we text back and forth. I am very lucky in that vein and I never abuse that privilege. We are also FB buddies. Imagine that!!

So I am putting it out there. I know that doctors order tests for various reasons but if Alan does not need a prostate biopsy, he doesn't want one. I told him "You have the right to refuse anything you want to refuse". His uro had been saying "He might have age related cancer, or actual prostate cancer, the cells can go either direction, blah blah". I get this.

So guys, he's peeing fine. Has a good stream. Doesn't get up all night to pee. Just pees like a regular man pees (sorry to be so blunt).

So what do you think the urologist will say? Do you think the psa of 2.18 is indicative of a prostate biopsy?

Thanks very much to all of you

Sincerely, Melody (aka Sproutlady)

UPDATE UPDATE UPDATE.

Just found his previous PSA. It was 2.41

Hi all.

I want to run this by you. At his most recent urologist visit the doctor said "you know they have something new and instead of a prostate biopsy we can do an mri" I said 'oh, so it's not invasive" He said 'Exactly"

Well, they sent him for the mri. He came out in 30 seconds. Because of his neuropathy and twitching they could not do the test.

So tomorrow we keep our urology appointment and we will find out if the doctor thinks he should go for a prostate biopsy. I ran this by his primary care physician who said "He does not need a prostate biopsy, his PSA went down from 2.41 to 2.18 so he does not need one'. I'm glad I ran this by Alan's doctor.

Alan doesn't want a prostate biopsy, his doctor doesn't think he needs one, but this urologist is very thorough and I know we have the right to refuse this but what can I say, how do we word it if indeed, this urologist says: "Well, there were those pre-cancerous cells and while I do think it's age related, I feel........"

Please, people, tell me how to word this. Thanks

Melody
And if you want to hear what we've been doing regarding his psoriasis, I just posted on the auto immune forums. I've got him on Flax seeds and other Omega 3 foods.

Thanks much

Melody

Hi Melody,

I wish I could help you with the "wording" of your response should the doc strongly advise a biopsy and you and Alan wish to refuse. YES, you (rather Alan) has every right to refuse if he desires that option.

I know exactly what you mean about the "wording". I am in a similar position wishing to refuse a medication prescribed for me that has too many "complications" for my liking but the doctor is insisting it is absolutely necessary. (Also, cancer potential related.) I attempted to state my reluctance during the office visit when the drug prescription was being written. I seem to lose all "tact" and come across as not trusting his medical expertise. THAT was NOT my opinion. I DO trust his judgment in his specialty and if I did not have so many "other" conditions, I would probably have little concern about taking the med. BUT, reading the literature on it, it will affect my other medications for other illnesses and conditions and I am not as sure as the doc that the med is really as necessary as he feels it is under my overall health.

Sometimes I think "specialists" get tunnel vision and do not put as much emphasis upon conditions and illnesses that are outside of their specialty expertise.

I guess I would suggest to you, that you state your feelings to the urologist in the same manner you expressed it to us, here.

It is sad that patients have to be concerned with the "ego" of the physician and not want to "step on their toes". Yes, they have more medical training and knowledge than the lay person, but ultimately, it is the decision of the patient, after being well informed. Sometimes docs just want to cover all bases and be sure they have not left something unchecked.

Bottom line, tactful communication is NOT in my treasure chest. I hope someone with those skills will respond.

I think your post is well stated and I would state it just that way if confronted with the need for a response.

Best wishes to you and Alan.

Hi Hopeless and Melody

Like you I sometimes have difficulty putting into words exactly what I need to say when I'm in the doctors office - (time pressure, short-term memory problems and fatigue all contribute).

Sometimes if it's something that I feel is important or complex I will write a letter to the doctor prior to an appointment so that they have time to consider my position before we discuss it.

Also if I feel there is any misunderstanding during an appointment I will write a letter after, either "seeking confirmation" or claiming "confusion on my part".
The effect of this is that the doctor actually pays more attention to my input.

In this day and age, when communications are rushed or limited to the doctor looking at only what is current on the computer screen, having an old-fashioned letter, outlining your position, and including any relevant medical history (eg adverse drug effects), can be constructive.

I would also suggest to try and keep any written communication as short and straight-forward as possible - keep emotions, speculation, anecdotal internet information etc out.

Melody - All the best for reaching a mutually agreeable plan with the doctor, for ongoing treatment for Alan.

Hi to you both. The appt was this past Wednesday. I walked in with a bag of my sprouts. The doctor's eyes lit up. He's a good guy and a straight shooter. So I'm waiting for the NEWS. He takes him into another room, comes out and says "we did a urine test, his urine is still a little dirty" (Alan's a non medicated diabetic who is so controlled by me and his diet he hasn't had anything BAD in two weeks). I looked at the doctor and said "But his urine is a pale color". He says: Oh, no he doesn't have an infection, but he still has colonization, remember when he was hospitalized for that ecoli UTI, well, there is still some colonization going on and we want to nip that in the bud" Since I trust this guy and he has kept Alan's prostate alive and kicking since the Turp, I'm not going to say 'no, he ain't taking no anti-biotics".

So he prescribed a 30 day regimin of Keflex. I give him Kefir, we ordred the probiotics which should arrive in a few days. All in all, this man eats like a champ. Absolutely nothing refined. I grow about 70 percent of what we eat (organically). He seems to love it. But he does get that look and says 'oh, I miss ice cream, can't I even have the no sugar added". I said 'if you look at the ingredients in those things, there are things you can't pronounce, so no you are NOT eating any of that stuff, go and have an apple" So he does

I have resorted to making the most delicious no sodium curried chicken with tumeric and cumin and I have it read at night when he gets the munchies. He eats it and goes 'OMG, this is great". So thank god I found something for this man to eat. He lost weight, and the doctor was very pleased.

Oh, about the prostate biopsy. As the doctor was passing by my chair I looked at him and said "no prostate biopsy". He said 'no, don't worry"

They also took blood for the PSA Test.

They seem to know what they are doing, and I definitely know what I'm doing as far as growing food and feeding this man. Someone (very kind person) mailed me some holistic cream and the container says "Calendula Offianalis Cream" which is supposed to help with skin conditions. This is day two for that one. She also sent him some Hypericum Perforatum Cream that MIGHT be helpful for his neuropathy. He tried it last night. Did nothing. Today my back was killing me, I put some on my back, guess what? It helped me.

Hey, whatever helps, I'll do it. These containers are 1.5 oz of the creams. People are so kind in this world.

So, for the present, he's not getting any biopsy, we see the uro guy next month. He's eating an anti-candida diet, he likes my sprouts.

OH, FUNNY STORY.

Alan whispers to me earlier "Mel, I think I had a parasite" I said WHAT??? I then asked him "Did you grab your stomach, did you have diarrhea?" He said:

"No, but there was this stringy thing in the toilet bowl when I went to the bathroom." I burst out laughing, went over to my rack where I grow my food and held up the bean sprouts and pea shoots, and said 'Did it look like this?" He said "oh"

Oh, indeed!! rofl.

I know we have photos on this forum. I'll try and upload photos so you can see what I grow in my house.

Thanks guys, Melody

Hi there. Just uploaded a photo which shows you what I'm growing in my living room. I use a power sprayer which you pump and then press the button and it waters in a continuous motion. I do this twice a day.

I grow my bean sprouts (there's a photo of my pea shoots in my album) and other stuff in my kitchen. I try and do things as neatly as possible. All organic and they taste fabulous.

Then I go to Dunkin Donuts at night and stare at everybody who eats all those sugar filled creations. Alan could never do that. They try and send him home donuts. I say "Please don't sabotage us'. We all laugh.

Regards

Melody