PSA = 14.34 No longer "slow" disease!
09-Jan-06: Dr. Seward. Received PSA results of Jan 3rd above - What now?
STOP: Graviola
12-Jan-06: START: AHCC Immune Booster 2 caps daily
Post History and Questions to P2P (Physicians to Patients)
16-Jan-06: Received Reply from Dr Stephen Strum MD, FACP - Medical Oncologist Specializing in Prostate Cancer. You may view his comments at: http://sscompcd.blogspot.com
PSA = 15.95
We wait and we PRAY - still the best medicine!
25-Jan-06: We get the dreaded phone call from Dr Tannock's office: PSA still rising ( 15.95) - but not at the same alarming rate! Praise God. Still the news depresses Gord, he was so confident that it was going to stop in it's tracks. He is extra fatigued tonight and we do not go to prayer meeting, although the blowing snow and white-outs seem to have stopped.
Chart showing Gord's PSA Doubling Time:
| Date | PSA | # days | Doubling time | average velocity |
|---|---|---|---|---|
| 6 Dec 2005 | 7.70 | |||
| 3 Jan 2006 | 14.34 | 28.00 | 31.21 | |
| 18 Jan 2006 | 15.95 | 15.00 | 97.71 | 62.01 |
26-Jan-06: START: HDK 400mg tid; HC 20mg bid
31-Jan-06: PSA= 13.57
01-Feb-06: Today we dropped in on Gord's neurologist to ask if he would be at any more risk than any other man if he were to be on an estrogens with coumadin and frequent INR checks - his answer was that the estrogens therapy would increase risk, and that the coumadin with strict INR testing would greatly reduce the risk - but NOT to ZERO. One has to weigh the risks of the treatment outcomes with the risk of the cancer outcomes without treatment. Of course, without trying it, we do not even know if Gord would be sensitive to Estrogens at this point.
03-Feb-06: See Dr. Seward (GP) Get PSA results of Jan31st
PSA = 13.57 !!!!!!!!!!!!!!!!!!!! DOWN - Praise God!
GP is willing to refer us to any doctor in Ontario - hmmm evidently the Dr. we have been hearing good things about is in Montreal - have to phone him about that! Will keep you posted. Lab work for liver enzymes (Re HDK) and blood sugar (Re HC
Increase AHCC Immune Booster to 3 caps daily.
09-Feb-06: Appointment confirmed March 14th with Dr. Armen Aprikian, MD, FRCSC, Head of Urology McGill University and Chief of Urology, MUHC.
27-Feb-06: Mt Sinai Hosp. - total Body Bone Scan - No visible Mets.
28-Feb-06: PSA = 3.14 AMAZING!
06-Mar-06: After taking his Fosomax this morning, Gord felt "queasy, but managed to wait his required 1 hour before eating his breakfast and taking other drugs and meds. Shortly after that he became quite sallow and looked ill and had one bout of emesis. While vomiting, he was quite warm and perspiring. Called Dr Seward's office and soon had a call back from the doctor. Was to hold all meds for remainder of day; rest and drink fluids. If situation worsened - to go to ER; if things settled, to bring him into office early next morning.
He drank and slept his way through the day with no further nausea, and had a light supper at night. Next morning we visited Dr Seward at his Angus office. He found no gastric or liver tenderness, but there were considerable bowel sounds. He believes Gord may have had a short term viral attack, but to make sure - he has ordered another liver panel. (Says all was normal in February Labs) . He also prescribed a short term (10 days) supply of Pariet 10mg (rabeprazole sodium - enteric coated tablets H+, K+ - ATPase Inhibitor)
http://www.medbroadcast.com/drug_info_details.asp?brand_name_id=1572&dowhat=accept_disclaimer
Gord has started back on the HDK - in fact he took a morning dose before we saw the doctor, he has no further symptoms and does not think he needs the Pariet. Of course the action of this new drug can limit the absorption of the HDK which is doing a wonderful job at the moment. Gord also continues to take the AHCC supplements.
It was while at the Doctor's office this morning that we received the amazing news of the PSA report of February 28. What an amazing drop in PSA!
09-Mar-06: Princess Margaret Hospital: Saw another "stand-in" doctor instead of Ian Tannock. lab results: PSA = 3.33
20-Mar-06 :Saw Urologist Dr. Aprikian @ Montreal General Hospital. Not overly helpful.
04-April-06: PSA = 2.62 Still slowly moving in the right direction.!
04-May-06: PSA continuing its downward trend, = 1.8 !! The last time it was this low was December 2003. We discussed Estrogen patches; pros & cons and after next blood work, Dr Seward is willing to prescribe same in hopes of giving Gord a bit of energy. Need to study this further.
16-May-06: An opportunity on the Prostate Help Chat, to ask questions of a PCa expert, Dr "O"
"The information following is Copyrighted by Don Cooley - Prostate-Help at http://www.prostate-help.org/. Don Cooley has given permission to quote the following:
Jan's Question: Dr, thank you for being here! Can a man approaching his 80th birthday after 8 1/2 years since D2 Dx and several nadirs on & off Casodex with AAWR's and contiuous Lupron - can such a man ever expect to be able to stop Lupron, and if not can he do anything to overcome the muscle weakness and fatigue that is his daily lot? What would Estradiol patches do for such a person?
Dr"O": ...that long term fatigue and muscle loss is a big issue. Exercise seems to help and anti-depressants might help too. Estrogens (low dose) might help hot flashes and libido and bone density but not muscle.
Jan: What dosage estrogen for patient still on Lupron 8+ yrs after D2 Dx would give some relief - co-morbidities already include brain stem stroke - well recovered - and triple by-pass heart surgery; presently responding again on HDK +HC would you give estradiole for such a patient only for QOL purposes?
Dr "O": ....what are the symptoms that impair QOL?
Jan: Lack of energy, weakness, fatigue.
Dr "O": ...I doubt estrogens will help and clot risk is increased...no estrogens are suggested - End Quote
However later in the chat the Dr. admitted to having very little knowledge of the use of the estrogen patches, but still uses DES (oral oestrogen) which we KNOW is contra-indicated in stroke and heart patients.
30-May-06: PSA = 1.67 Still moving in the right direction. Gord has noticed some "sticky skin" a known side-effect to Keto. but it is not overly bothersome. Goldenseal powder has been recommended.
Another Chat on-line with another PCa "EXPERT" One who has himself suffered from the disease, treated it aggressively and studies it extensively. I asked the exact same question and had a diffent reply:
"The information herein is Copyrighted by Don Cooley - Prostate-Help at http://www.prostate-help.org/. Don Cooley has given permission to quote the following:
Jan: What would Estradiol patches do for such a person? Presently on HDK + HC and heading for his 6th nadir. Present PSA 1.8, T castrate, Bone scans negative.
Dr "M": In this setting, the key is to get a complete remission. This means a PSA less than 0.04 ng/ml and no disease by bone scan or CT scan. As to the specifics, I cannot tell from your brief history. Yes, transdermal estrogen can help. Ketoconazole is useful and taxotere chemotherapy can also do wonders. The key is to string treatments together in sequence so as to get the complete remission. It sounds as if you have stopped treatments short of a complete remission and let your cancer regrow. Also, it is key to maintain the complete remission with something, not just go off treatment altogether."
I did not have opportunity to correct the good Doctor's impression that we were doing some kind of intermittent on & off treatment. The only time we were off a medication was when the PSA was heading upwards! Except for stopping all meds for surgery last year, Gord has been being treated continuously. A question was asked by another and the answer is applicable here:
"The information herein is Copyrighted by Don Cooley - Prostate-Help at http://www.prostate-help.org/. Don Cooley has given permission to quote the following:
"Dr. , can the recommended supplementation of ADT with an estradiol patch to help with hot flashes and bone loss endanger the efficacy of an eventual future DES or estrogen therapy?
Dr "M" : Vivelle dot 0.025 mg per day patch, one patch every 3.5 days does a wonderful job reducing hot flashes, osteoporosis, memory problems and fatigue in patients on Lupron. This dose is 1/32 of the dose used to treat cancer, so it should not compromise future use of transdermal estrogen for that purpose. I never use DES, so no comment.
When asked about his use of transdermal estradiol and blood clotting problems (Deep Vein Thrombosis) he replied:
The one paper on the subject nicely documents that the patches REDUCE blood clotting in prostate cancer patients. I think one or two patients I have had on estrogen skin patches developed blood clots, but prostate cancer does that as well and I think it was the cancer that caused their problems not the estrogen." - End Quotes
So as you can see - even the Experts do not always agree; but I think the patches are an option we may yet try.
15-May-06: Gordon increases his Vit D3 supplement from 1000, to 3,000 I.U.'s daily.
31-May-06: To Princess Margaret, saw a Dr. Joshua instead of Dr Tannock. Asked if they would measure DHT with next blood work; and heard again: "We don't do that"
27-Jun-06: PSA = 1.68
28-Jun-06: Missed 28 day Lupron shot due to holiday and negligence (mine)
24-Jul-06: PSA = 1.43 June measurement could be a blip or lab error?
25-Jul-06: FBS = 7.5 Rx - control diet (Low carbs!)
28-Jul-06: Regular q 6 week podiatrist appointment; Dr. called me in to see what Gord had been walking around with - big toe of Left foot terribly infected - Dr. Patel had to cut most of the nail off to treat the infection. using peroxide and fusitin twice daily and bandaging - to wear only a pair of birkenstock sandals.
04-Aug-06: Dx: blepharitis; Dr. Seward;
Rx: Gentamicin Sulphate Opth. drops 4 times daily;
(He has also given us a two week supply of Estraderm 25 - each patch gives a nominal controlled release rate of 0.025 mg/24 hours. Gord has yet to open the package! Not sure what he is waiting for? )
21-Aug-06: PSA=1.99 Up again.
23-Aug-06: Dr Tannock at PMH. "Stable disease" no change in treatment another three months before next appointment.
12-Sep-06: Saw Dr Seward for persistant cough after a bout of flu 10 days prior. Also complained again of right ear discharge and discomfort.
Rx Avelox 400mg daily X 10 (Broad-Spectrum antibiotic)
Rx Cipro HC Opthalmic 0.2%/1% drops: 3 drops b.i.d. in right ear for 7 days
14-Sep-06: Chest x-Ray - results negative
18-Sep-06: PSA= 1.57
19-Sep-06: FBS= 4.3 low carb diet is working!
11-Oct-06: Dr Arts - Neurologist - "Staying stable" Reduce neurological visits to annual.
16-Oct-06: PSA=2.32 - Scary!
17-Oct-06: Vit D level = 33 - continuing on 3,000 I.U. of VitD3;
FBS = 5.1; TTl Chol=4
27-Oct-06: Dr Seward
30-Oct-06: Dr. Seto, Opthamologist; Re: Blephoritis; Dx is Acne Rosacea,
It affects fair-skinned people of mostly north-western European descent, and has been nicknamed the 'curse of the Celts' by some in Ireland. (Wikipedia)
13-Nov-06: Dr Seward: Referral to Dr Fiala - Dermatologist re Rosacea Dx. (Jan '07)
14-Nov-06: Dr Scott, Dental cleaning.
20-Nov-06: PSA=1.69 - better but trend still upwards.
21-Nov-06: MDS labs: Vit D level now 60
21-Nov-06: Dr. Riddell; ENT - examined ear and Rx. Cipro otic drops again b.i.d.
22-Nov-06: PMH visit; seen by another new doctor; Dr Tannock not in the building. Rebooked 2 months instead of 3 months.
28-Nov-06: Dr Riddell: was for possible suctioning/cleaning of ear, but drops working well, continue drops until Dec 8th.
29-Nov-06: Dr Seward for earlier PSA results & Nov 21st bloodwork. No changes.
12-Dec-06: BMD and visit @ St Michael Osteoporosis Clinic, Toronto. Result: No sign of OSTEOPOROSIS! Slight osteopoenia, and considerable arthritic degeneration. Continue fosomax. Re-visit in 2 years!
18-Dec-06: PSA= 1.62
