So much for our second opinion. Irv and I were both unimpressed with this radiation oncologist, along with his attitude. He seemed angry and annoyed with my questions.
Upon asking him, he told us that he believes that Irv has about a 20% chance of cure with radiation therapy but that's the only chance of a cure. I realize this and it came as no surprise.
I asked him about hypofractionated radiotherapy and he said that this isn't done when there's a prostate and that this wouldn't be something that would even be offered to Irv, especially since he has a history of ulcerative colitis. Irv, by the way, had a colonoscopy last week and, apparently, the gastroenterologist saw no scarring in Irv's colon and gave a written report that Irv could have radiation therapy.
He also talked about ADT and said that this would be a good idea whether or not Irv decided to go for radiation. However, he said that he would only give Irv the Lupron injection. He said that Casodex produced more side effects and Avodart was used, originally, for BPH and triple blockade was more suited to those who didn't have surgery. I asked about DHT and how this all fits into the equation and he said that Lupron gets rid of the Testosterone which is what creates DHT. So, basically, he turned his nose up at me with that question.
He talked about the side effects of the hormone therapy and mentioned, in the list, loss of bone density....but when I mentioned the drugs to counteract that, he thought I was referring to the hot flashes and he responded with a very curt, "There ARE no medications to stop hot flashes". I told him that I was referring the bone density, which are of course the bisphosphonate drugs, like Fosamax, along with Vitamin D3 and Calcium. He didn't address that.
So, after asking my questions, he said, "Well, do you or don't you want to have a chance of a cure?" (referring to the radiation therapy). Irv and I were totally turned off by his attitude.
He continued that the Lupron only works for a period of time and then there is nothing but chemo. I turned to Irv after a few moments and said, that there's also second phase with Ketokonazole.....Of course, there's Leukine and others which I didn't mention, nor did I mention Dr Myers' explanation of a clinical trial whereby it was found that even at half dose radiation to the pelvic lymph nodes of post-RP patients, it seemed to help increase the number of years with negligible PSA. There was no point.
The RO told us that he had many patients to get to and had to cut our discussion short. As he was leaving, Irv said that we would just stay a few minutes in the room to discuss things, but this doctor asked us to leave and discuss elsewhere as the room was needed for other patients. Perhaps we were needing to express emotion...perhaps we needed 5 minutes to compose ourselves. Clearly, there was no time for this.
Irv will go back for another PSA test next week to see if there's a significant increase over the past month. Frankly, that's probably the most frightening thing for me now. We also have an appointment with his RO from PMH and hopefully that will be a better experience for us. This is just so difficult.
I really welcome your responses to what this doctor has commented on. Mostly, have you heard that triple blockade isn't necessary for those who have already had a RP?
I am deeply sorry and moved by your post. That oncologist should be sent to hell.
I believe that your husband will find a reasonable solution for his problem. Just do not despair. Continue the investigation and you will reach to that missing piece of the puzzle.
If you want to know about HT please go to a medical oncologist specializing in PC. Most radiation oncologists and urologists know very little about HT and the answers your radiologist gave you were dead wrong. Casodex has about 20% of the side affects of Lupron and ADT3 has proven more effective than mono therapy alone.
Please read "Primer on Prostate Cancer by Dr Stephen Strum and "Beating Prostate Cancer; Hormone Therapy and Diet" by Dr Charles Myers and you will know much more than your regular doctors about HT.
Thank you, Baptista and JohnT. I don't know what I would do without my connection here. I feel the same as both of you. John, it seems that hormone therapy has no designated specialists here in Toronto. It's the urologist/surgeon/oncologist who has the multiple role. The psychologist at PMH said that hormone therapy is simple and that's the reason for this. I think I beg to differ on that, based on what I've been experiencing thus far.
This RO today....oh, I'd love to spread the word of his name but I won't...said that he would do the hormone therapy himself.....or Irv can even have it done by his gp.....argh!!!!
We're also concerned about coverage of all of these drugs....We are both self employed with a very small income. If they aren't covered, I can't imagine surviving the cost of them.
Sorry it isn't going so well. I had RP followed about 5-6 mos later with radiation and single bockade. then added casodex and finally with dr Myers added Avodart for triple. it was after adding triple that PSA dropped to >.01. I have been on Avodart only since and PSA has started to rise but that was expected.
The local oncologist and i did not see eye to eye and since he was the only one around, the next closest being Manila I initially had my shots at my personal physicians. It actually was easy enough for my wife who is a nurses aid to start mixing the Lupron and giving me the shot. My Personal physician orders my blood tests and I get a copy from the lab also and forward to Dr Myers. So administering the drugs are not the issue but having someone knowledgable looking at your results and discussing them as you go forward is.
You med costs will be much lower than our US cost but it is still expensive. You have access to the trillium drug Plan via your OHIP program if the costs are over a certain level if you haven't checked it out.
Wish i could help woth a Drs name in the area. This would be one of my concerns about coming back to ontario when we retire in the next couple of years. hope you work it out with someone there.
Well, John, the RO we saw yesterday did say that, if we insisted on Avodart, they would give it to Irv...and I guess that would work for Casodex as well, and hopefully, Fosamax, too.
So, maybe if we just get some advice from all sources, then we can just ask that the drugs be prescribed. I, personally, won't stop until Irv gets what he needs to increase the longevity of his life.
I'm terrified of the costs....some drugs aren't covered by Trillium. Irv's mother already said that she would love to help, but.....you know how it is.... Both Irv and I don't make very much money...no drug plan....limited help with Trillium....and already his mother basically said...sorry...can't help out..... The way I look at it, any help is better than no help at all and every little bit of help would make a difference. On the other hand, Irv said he'd rather die than take money from anybody....It's just a horrible situation. Lupron is funded for men 65 and over....So, Irv is 51....at the young end of the spectrum to be dealing with prostate cancer...How unfortunate on more than one account.
The following user gives a hug of support to honda50:
JohnG, nice seeing your post. Your advice to Rhonda was on my mind when switching on my computer. Rhonda could do exactly as you say, without being worried.
My experience is similar to that. I have started ADT last November under the guidance of my Uro-oncologist at the big institution-hospital SM in Lisbon but the drugs are administered by my GP where I live in the south of Portugal. It is also here that I have all tests done. The Uro-onco gave me instructions on everything and told me to call him if any nasty side effect would occur. My next appointment with him is in May (6-months periods). In my plan of management I have included the possibility of consultations with Dr. Myers by phone (and e-mail) as you suggested and because his office accepts my case on that basis.
In the future, once in need of the “second-line” hormonal treatment, I plan to move to a doctor of the scale of Dr. Myers or Dr. Scholz.
I suspect that a quick call to Dr. Myer's office will tell you if he's taking new patients and what a consultation might cost.
One thing that I think you'll find from Dr. Myers is a sympathetic physician who will understand your medical and financial concerns. While it may cost a bit to consult with him, in the long run, you will end up saving money because you won't have to visit other doctors, and he will likely fashion a treatment plan that will work with your finances - to the extent possible. In addition, you won't have to spend extra on dead-end treatment attempts by doctors such as the bumbler you mentioned at the start of this thread. I think you will finally get peace of mind from knowing that you are in the hands of a competent expert who will provide the best treatment Irv could get.
I have a long-distance relationship with Dr. Scholz which I enjoyed. It cost me $600 for his expert opinion, but I have complete confidence in him, and now I use my general practitioner for tests and such under Dr. Scholz's guidance, which saves on bills from specialists for all of that.
I noticed you asked a question on Dr Myers fees. you can give them a call and they can fill you in, he is at the American Institute for Prostate Disease in Earlysville Virginia.
I looked into (online) drug prices in Canada recently and was quoted the Following
Lupron 22.5 mg (3 month injection) $1300 but the generic version Leuprolide (spelling?) was only $600.
Another Alternative is Zoladex 3 month 10.8 mg at $600, I am not sure if you have a generic for this.
As far as I can tell any of the above are equally effective.
Casodex 50 mg was $178 for 28 tabs but bicalutamide the generic (which I used when we were able to access in US last year) was $29.00 for 28.
Avodart .5 mg was $49 for 30 but the generic dutasteride was $75 for one humded tabs.
If you haven't checked the Lupron alternatives on trilium you may want to as sometimes the generics or alternatives have different rules.
All the best
PS I am currently covered by a drug plan but some drugs here are 2x or more what they cast there and many do not have generics available.
Thanks, Guamjohn. That's a lot of very useful information. I really appreciate it.
Irv and I went to a conference this evening and a research scientist/radiation oncologist from PMH spoke on future hope for prostate cancer patients. It was difficult for me to hear, so I couldn't pick up on a lot of it, but it was based on individualized cancer treatment.
We had the opportunity to speak with him after the presentation and he was much better to speak with than the doctor we saw on Tuesday. His answers made much more sense, but still, some of his opinions differ from those expressed here in the forum.
With regards to hypofractionated radiotherapy, he explained that this would not be suitable for a patient who has had ulcerative colitis. He said that there were fewer sessions but that each one was more powerful. With regards to Dr. Myers' comment on the clinical trial with post RP patients who experienced good results after having received half dose radiation to the pelvic lymph nodes, he said that it would still be better to receive full dose for the best results.
Now....here we go again...hormone therapy. He actually asked me to explain what I knew about triple blockade, so I told him my understanding of the roll of Casodex being taken before the Lupron/Zoladex injection to prevent the Testosterone spike and I told him of my understanding that the Avodart works against the DHT...I didn't mention the idea of the Avodart being continued after the other two meds were stopped, as maintenance.
He wasn't a strong believer in the Avodart, and he said that maybe triple blockade was more appropriate for those who only have hormone therapy but not radiation and/or surgery. He said that taking all three would increase the side effects. He did, however, mention that we could talk to our radiation oncologist about our concerns about it. As far as I'm concerned, better safe than sorry and I would make that clear during our visit with the RO. At any rate, both of these doctors are wonderful to deal with and seem to listen and respond with respect. Apparently, Irv's RO actually specializes in advanced prostate cancer treatment, so we feel good about that.
This evening actually turned out to be very positive for Irv and I, especially because this wonderful doctor who spoke seemed to have a very positive outlook on Irv's future survival, because of upcoming treatments on the horizon. This is what we need to hear. Without hope, albeit, realistic hope, we have nothing.
Wonderful news. You are in the path to find that missing piece.
It is not surprising to hear about their negative comment on hypofractionated radiotherapy. This is a modality to “kill” localized targets/tumors. I think that you had the opportunity to verify about proton radiation possibilities. As I commented in your other thread, this is a friendly way of radiation to patients with colitis, however, it is expensive and that may not be what you are looking for, unless you find a financial source.
In a post above you comment that Irv’s doctor gave him a clearance on the colitis. That puts IMRT as a possible treatment too (aiming at cure). You only would need to verify a “friendly” isodose plan particular to Irv’s case at your local radiologist.
JohnG and Jim have already mention on the possibility in obtaining HT generic drugs cheaply and reliable. If you have a family member (whatever generation) in Europe, you could apply for treatment under the National Health System which is free for oncologic patients. There are thousands of foreigners (non EU citizens) been treated in the EU. I read somewhere about a sort of trial for proton therapy in Germany (???).
Hopefully the puzzle will be completed.
Baptista, the RO that we spoke with last night also said no to Proton therapy and Cyberknife which I mentioned. So, it seems, if Irv decides that he'd like to go for radiation, then I guess we just have to let PMH be the deciding factor on how it's administered and hope for the best results.
As for possible treatment in Europe, unfortunately I have no family there. However, I have a guest coming into my home from the UK for 2 weeks....would a friend also apply to this or does it have to be family? But, how is this done? Would Irv have to go stay in Europe while he's being treated? That would just not be feasible at all.
One more question....Where is Jim these days? I always appreciate what he has to say and I feel like we're seeing less and less of him. He's a very valuable guy to have around. I think we all agree on that. Come out, come out, wherever you are!
Thanks for the info on proton. Sincerely I do not know how could Irv get treated in Europe. Canada makes part of the CW countries and that may have some sort of benefits to their citizens particularly in UK.
I am sorry if my idea about Europe is not viable. Just thinking in a solution to help you.
Jim is on/at ADT "vacations". He commented that in another post bellow. He is enjoying is drugs free timing.