Medical Forum / Diseases and Disorders / Prostate Cancer / January 2008
New stats for Steve Kramer - not good
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limey - 15 Jan 2008 02:48 GMT In August 2007, Henry's PSA was up, from 0.2 to 1.7 and he was put on Casodex in addition to the Lupron. By mid-December, the PSA had risen to 13. He was taken off Casodex on December 31 and started on Dilaudid and Decadron. After a 5-day hospital stay, he starts radiation tomorrow.
 Signature Dora limey113@yahoo.com
Gourd Dancer - 15 Jan 2008 04:56 GMT Dora, I am sorry to hear about the increase. My prayers are with you and Henry. I forget, did he ever start a chemo regime in the fall of 2006?
Gourd Dancer
> In August 2007, Henry's PSA was up, from 0.2 to 1.7 and he was put on > Casodex in addition to the Lupron. By mid-December, the PSA had risen to > 13. He was taken off Casodex on December 31 and started on Dilaudid and > Decadron. After a 5-day hospital stay, he starts radiation tomorrow. limey - 15 Jan 2008 22:48 GMT In spite of my begging, my husband steadfastly refused to go to an oncologist until recently (December 31). Up to this point, he has been fatalistic about chemo - he's 83 and keeps saying that he'd like to enjoy the time he has left rather than chemo (IV) making him sick and robbing him of QOL.
He had put his faith in our primary, who was the MD who (I feel) was very neglectful and who goofed up his diagnosis in the first place. In turn, Henry was treated with ever-increasing painkillers, and having ever-increasing pain, until eventually he was actually out of his head.
Dora
> Dora, I am sorry to hear about the increase. My prayers are with you > and Henry. I forget, did he ever start a chemo regime in the fall of [quoted text clipped - 9 lines] >> Dora >> limey113@yahoo.com Alan Meyer - 16 Jan 2008 01:12 GMT > In spite of my begging, my husband steadfastly refused to go to an > oncologist until recently (December 31). Up to this point, he has been > fatalistic about chemo - he's 83 and keeps saying that he'd like to > enjoy the time he has left rather than chemo (IV) making him sick and > robbing him of QOL. I didn't know Henry's age when I made my other posting.
I understand Henry's decision. As we get older our bodies don't heal as well as they did when we were younger and aggressive treatments are less effective while creating more side effects than they would for a younger man. It may well be that, at Henry's age, he's reached the end of the line and further treatment is just not going to help. It can be very hard to know when to keep trying and when to give up.
> ... Henry was treated with ever-increasing painkillers, and > having ever-increasing pain, until eventually he was actually > out of his head. I don't really know much about cancer pain. My own cancer was treated at an early stage and I haven't experienced the terrible pain that cancer patients often feel. However I have read that there are at least three very different kinds of cancer pain that require different kinds of treatment. I have also read that a good cancer pain specialist can make all the difference in the world in pain management.
I remember that one of my uncles died of cancer about 30 years ago. He was in great pain and getting little help from drugs when my aunt found a hospice where they specialized in pain management. She claimed that they helped him a great deal.
All doctors know something about pain management, but very few of them specialize in it and really understand all the options. If Henry's doctor can refer him to a real cancer pain specialist, he might be able to make a difference.
I see that you are near Annapolis. If your doctor doesn't know anyone you might want to contact Johns Hopkins or the University of Maryland Medical Center oncology departments to see if they can recommend someone.
This is such a hard time of life. I hope that, in the midst of pain and loss, you will still be able to enjoy a few good days and good memories together and with the rest of your family.
Alan
limey - 16 Jan 2008 02:14 GMT > I see that you are near Annapolis. If your doctor doesn't know > anyone you might want to contact Johns Hopkins or the University > of Maryland Medical Center oncology departments to see if they > can recommend someone. Fortunately, within the last year or so, Anne Arundel Medical Center has become affiliated with Johns Hopkins, so I hope that means the two facilities will exchange information as well as physicians. I do know the oncology group Henry's now going to has Hopkins-trained and Harvard MDs within the group.
The only thing I personally am so relieved about is that he is now in the hands of an oncologist, rather than just our primary doctor.
Dora
> This is such a hard time of life. I hope that, in the midst of > pain and loss, you will still be able to enjoy a few good days > and good memories together and with the rest of your family. > > Alan El Woody - 18 Jan 2008 21:06 GMT > > I see that you are near Annapolis. If your doctor doesn't know > > anyone you might want to contact Johns Hopkins or the University [quoted text clipped - 19 lines] > > - Show quoted text - Dora - Are you on the eastern shore? My folks make the same complaints about their primary and knowing that Anne Arundel has high quality MD's will ease my mind about their care. Thanks for posting!
Dora - 19 Jan 2008 15:36 GMT > Dora - Are you on the eastern shore? My folks make the same complaints > about their primary and knowing that Anne Arundel has high quality > MD's will ease my mind about their care. Thanks for posting! Yes, I'm on the eastern shore. High quality primaries seem to be in the minority, I'm afraid. Our primary really blew this one.
I'm pretty critical of doctor/hospital care, but I can't speak too highly of the treatment Henry received and the quality of the specialists and nursing staff affiliated with Anne Arundel Medical Center. Also, I had not realized how up-to-the-minute the Cancer Institute was. He's now in rehab, getting a series of ten radiation treatments to relieve some of the pain. If only I could have talked him into this earlier, but he's stubborn. :-(
Dora
Steve Kramer - 15 Jan 2008 09:34 GMT > In August 2007, Henry's PSA was up, from 0.2 to 1.7 and he was put on > Casodex in addition to the Lupron. By mid-December, the PSA had risen to > 13. He was taken off Casodex on December 31 and started on Dilaudid and > Decadron. After a 5-day hospital stay, he starts radiation tomorrow. I am so sorry, Limey. Where is he to receive radiation, assuming it's palliative. I don't recall seeing the use of Decadron before. Is that just something to counteract the side effects of Dilaudid?
I'll keep him and you in my prayers.
limey - 15 Jan 2008 23:06 GMT >> In August 2007, Henry's PSA was up, from 0.2 to 1.7 and he was put on >> Casodex in addition to the Lupron. By mid-December, the PSA had [quoted text clipped - 8 lines] > > I'll keep him and you in my prayers. He will receive the radiation at the Cancer Center at Anne Arundel Medical Center in Annapolis, MD. Right now, he's in a rehab facility after being discharged after five days in the hospital. At my request, they will evaluate him and let me know what kind of care he'll need once he returns home.
It has been a scary time, since he was out of his head and I was unable to control him at home.
You asked about the Decadron. No, it's not to counteract the Dilaudid. Right now, I'm mystified, too, so I'll try and sort this out for myself. When Henry saw the onco on 12/31 and the PSA was found to have risen so much, he was taken off Casodex because the onco said that sometimes that would help the PSA to drop.
At that time he was put on the Dilaudid for pain, and the Decadron in order to see if that would determine whether it was a nerve pain or whether it was a tumour itself pressing on the spine. Unfortunately, it had some bad side effects - the breathing difficulties were caused by pulmonary embolisms (in turn, caused by the Decadron). He now has to have shots twice a day for that - for how long, I don't know. To my amazement, they are treating the embolisms but have him once more on Decadron. (??) He also couldn't swallow, so that had to be treated as well.
I've answered others who responded to my post, if you are able to take the time to read them. I appreciate your prayers, as well as those of others, so a lot of them are being sent "upstairs" right now!
One bright note (if you can imagine the feeling) - I had to have a PET/CT scan myself on Friday because they thought my cancer might have returned. Negative, negative, negative!!
Sorry this is so long.
Dora
Steve Kramer - 16 Jan 2008 01:04 GMT > One bright note (if you can imagine the feeling) - I had to have a PET/CT > scan myself on Friday because they thought my cancer might have returned. > Negative, negative, negative!! > > Sorry this is so long. Glad to hear at least you're doing well.
No need to apologize for length. You know that.
Gourd Dancer - 17 Jan 2008 03:47 GMT I took Dec for nausea with chemo initially, but then changed to Zofran - worked much better. Decadron is also used to stimulate eating for some cancer patients.
Gourd Dancer
>> In August 2007, Henry's PSA was up, from 0.2 to 1.7 and he was put on >> Casodex in addition to the Lupron. By mid-December, the PSA had risen [quoted text clipped - 6 lines] > > I'll keep him and you in my prayers. kh - 15 Jan 2008 13:12 GMT > In August 2007, Henry's PSA was up, from 0.2 to 1.7 and he was put on > Casodex in addition to the Lupron. By mid-December, the PSA had risen > to 13. He was taken off Casodex on December 31 and started on Dilaudid > and Decadron. After a 5-day hospital stay, he starts radiation > tomorrow. Dora,
I've got a similar pattern but other than the numbers, am feeling pretty good.
Here's some news, I don't know how effective Provenge is, I don't think that anyone does but it shows that there are new treatments in the pipeline.
Quote follows.
SEATTLE, Jan. 15 /PRNewswire-FirstCall/ -- Dendreon Corporation (Nasdaq: DNDN - News) today announced that the company has been granted a broad European patent covering the company's lead product candidate PROVENGE® (sipuleucel-T), the Company's investigational active cellular immunotherapy for the treatment of advanced prostate cancer. European patent No. 0 870 022 B1 covers the composition of matter of PROVENGE as well as the company's other active cellular immunotherapy (ACI) product candidates, such as NEUVENGE(TM) (lapuleucel-T), which utilize Dendreon's Antigen Delivery Cassette(TM) technology. The patent also covers methods of activating antigen presenting cells in vitro with certain fusion proteins developed by Dendreon, including the fusion protein that is used in PROVENGE.
"The approval of this broad patent covering PROVENGE and our other active cellular immunotherapies in Europe is an important milestone for the company," stated Mitchell H. Gold, M.D., president and chief executive officer of Dendreon. "While our priority is to obtain the approval of PROVENGE in the United States, the issuance of this key patent solidifies the commercial potential of PROVENGE and our ACI platform on a more international basis. Prostate cancer is a global unmet need with, according to Cancer Research UK, approximately 670,000 men diagnosed with the disease each year, and we believe that PROVENGE could have a worldwide impact on the treatment of prostate
-kh hang in there!!!!
limey - 15 Jan 2008 23:09 GMT >> In August 2007, Henry's PSA was up, from 0.2 to 1.7 and he was put on >> Casodex in addition to the Lupron. By mid-December, the PSA had [quoted text clipped - 12 lines] > > Quote follows. <information clipped and saved>
Let's cross our fingers and hope! Yes, we're hanging in there like mad. Many thanks for all the information.
Dora
Alan Meyer - 15 Jan 2008 19:40 GMT > In August 2007, Henry's PSA was up, from 0.2 to 1.7 and he was put on > Casodex in addition to the Lupron. By mid-December, the PSA had risen [quoted text clipped - 4 lines] > Dora > limey...@yahoo.com Dora,
I'm very sorry to hear of Henry's condition.
I'm not any kind of an expert, but I'd like to recommend that you and Henry look into some additional treatments.
One thing to consider is "second line" hormone therapy. Has Henry's oncologist looked at that? Has Henry already had it? The drugs typically used for this are ketoconazole and estradiol. There are also others. These drugs are not well tolerated by everyone and don't work for everyone. But some men get an extra amount of time from them. I seem to recall that some men have gotten as much as two years of low PSA from second line hormone therapy, but I'm not sure of that. Men who have "failed" first line hormone therapy with Lupron and Casodex may still benefit from "second line" therapy.
Another drug that is sometimes used is docetaxel. It is a chemotherapy drug approved for prostate cancer, not a hormone therapy drug. It used to be used only at a late stage in advanced cancer, but I think it's now being used at earlier times on the theory that if you hit the cancer with it while it is small you can get longer benefit than if you wait until it has grown.
Yet another thing to consider is clinical trials of new, experimental treatments. Henry is still healthy, which makes him a good candidate for some trials.
I don't want to get any hopes up about clinical trials. Experimental treatments are, after all, experimental. Most of them don't work out and many that do provide only limited benefit or only to some patients. But they might be worth looking into.
There are two websites that can be used in the U.S. to find clinical trials:
http://www.cancer.gov/clinicaltrials/search http://clinicaltrials.gov
They should show the same set of trials but have different search options. Clinicaltrials.gov is simpler to search. Cancer.gov gives more sophisticated options.
Entering a trial is something that could be discussed with Henry's oncologist. The oncologist may be able to give advice about whether this is a good idea, assist in finding something appropriate and, in some cases, might be able to facilitate entry into the trial by submitting test results.
Best of luck to you.
Alan
limey - 15 Jan 2008 22:42 GMT >> In August 2007, Henry's PSA was up, from 0.2 to 1.7 and he was put on >> Casodex in addition to the Lupron. By mid-December, the PSA had [quoted text clipped - 57 lines] > > Alan Thank you, Alan. I have taken your very comprehensive comments under advisement; it looks as though a long discussion with the oncologist is in order. I really appreciate the time you took and will make good use of your remarks.
Dora
callalily - 17 Jan 2008 02:23 GMT > In August 2007, Henry's PSA was up, from 0.2 to 1.7 and he was put on > Casodex in addition to the Lupron. By mid-December, the PSA had risen [quoted text clipped - 4 lines] > Dora > limey...@yahoo.com Dear Dora,
I can't give you better advice than you've already received. Henry is in good hands. I might add that he shouldn't be pressured into doing anything he doesn't want to do. I wish you both well and am keeping you in my thoughts.
I would like to append a famous poem, which is also one of my favorites. It reminds me of you, Dora, and all the other good women in this sisterhood who love and care for their men well into old age, often when they themselves are ill. These are the wives who are willing to accompany their husbands on the journey of life, *wherever* it will lead them. They are the "pilgrim souls" referred to in this poem. The poet declares his eternal and unconditional love for his wife, and even adds that, as they age together, she only becomes more beautiful in his eyes. And to make sure the wife doesn't forget any of this, he has memorialized his sentiments in a book, which the wife can take down and read whenever she likes.
[Note: This is just MY interpretation. Also, please don't get hung up on details, like the fact that the man is speaking from the "great beyond". It's the feelings that are important, not the timeline.] ------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------
WHEN YOU ARE OLD
-- by W.B. Yeats.
When you are old and grey and full of sleep, And nodding by the fire, take down this book, And slowly read, and dream of the soft look Your eyes had once, and of their shadows deep;
How many loved your moments of glad grace, And loved your beauty with love false or true, But one man loved the pilgrim soul in you, And loved the sorrows of your changing face;
And bending down beside the glowing bars, Murmur, a little sadly, how Love fled And paced upon the mountains overhead And hid his face amid a crowd of stars.
Take good care.
Leah
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