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How Sick Are You When They Offer Chemo???

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Posted 1/20/2011 2:21 PM (GMT -5)
Hi everyone, Mary here.

Thankyou all very much for the positive thoughts and prayers for Willie.

I'm just wondering at what point PCa patients 'should' be offered chemo??

As some of you know, Willie was hormone refractive in the summer but in August was told that chemo was not a choice, as his numbers were low and he was 'healthy'??

Even a conversation with another doctor brought a similar response.

Now, they've confirmed that he has cancer in both lungs, his abdomen and throughout his skeletal system and they are NOW offering 'chemo' but being more than evasive about it's chances/side effects etc.
Reason being, the doc on the ward is not his own med onc.

All that's been said is that he should take it, must stop vomiting first and that if it works, they'll use spot radiation on his compression fracture to shrink the tumor on his spine.

Yesterday, we found him in agony, freaked out and afraid to move, as well as nauseous.

Couldn't figure out what was going on but it turned out that the hospital had made a mistake and had him on 1/2 the dose of pain meds and were only giving him breakthrough meds.

After an hour on the phone, three pages to the onc doc and myself announcing that I was driving over with his pills to get him out of pain, at midnight......they changed his chart and topped up his IV.

Daughter and I were there before the breakfast trays today, just to ensure that he got what needs.

Willie is no longer in agony, has some nausea but has told me to check the insurance policies and finish up some paperwork today.

He has stated that he cannot cope with this for much longer.

We're caught up in our anger at his doctors for not offering the chemo much earlier, when Willie first became hormone reactive.

Do they usually wait til the disease has spread everywhere or are we right in our assumptions??

Thankyou again for the positive thoughts and prayers, please keep them coming, we're not giving up!!!

Mary
Posted 1/20/2011 3:06 PM (GMT -5)
Mary, I wish that I could give you a more complete answer, but this is not an area I am intimate with.   I can, however, share some of what I have learned, which may be of some help until you receive a better response…   Chemotherapy indiscriminately kills rapidly growing cells.   My understanding is that if the malignant prostate cancer cells are not dividing quickly, then chemotherapy treatment will not be effective .   You wrote that “ his numbers were low ”, and I’m not clear on what “numbers” you meant, but perhaps this is a part of his doctor’s thought-process.   As a general response to one of your questions, an individual’s response to chemo depends on (among other things) the toxicity of the drug… there are many, many different types of chemo .   Some drugs are more toxic than others.   What chemo are his doctors prescribing?   From your descript ion, it appears to me that Willie falls into the category of symptomatic androgen-independent prostate cancer (AIPC).   I have a paper published in “CA:   A Cancer Journal for Clinicians” which provides this suggested practice guideline for AIPC: Patients with symptomatic androgen-independent prostate cancer (AIPC) should be offered chemotherapy as a treatment option. Docetaxel is considered to be the first-line agent of choice. Mitoxantrone has a proven palliative benefit in patients with symptoms and can be considered as a first-line agent in patients who may not tolerate docetaxel. Because neither of these agents is curative, clinical trials for these patients should always be considered. Symptomatic patients with sites of pain secondary to bone lesions should be considered for palliative local or systemic radiation therapy. Patients with potential spinal cord compression should be treated with steroids and then evaluated for therapy with radiation or surgery. Zoledronic acid is approved for use in patients with bone metastases who have failed hormonal therapy. http://onlinelibrary.wiley.com/doi/10.3322/canjclin.55.5.300/full#jumpTo       The common chemo for mets to the bones is Zometa , generically known as Zoledronic Acid , which is a bisphosphonate.   Please go to this web site to read more about Zometa, including descript ion of side effects.   You can also use this site to investigate other chemo drugs by using the Search function. http://www.chemocare.com/bio/zometa.asp   I hope this helps you…            
Posted 1/20/2011 3:24 PM (GMT -5)
Mary,
I was offerred to participate in a study for early use of docetaxel as a stage 3b guy. We have a member here that also went ahead and did the therapy. However irrelevant as it is, there is evidence that earlier use can be beneficial. Unfortunately, Willie's cancer is late stage and progressive. The median life extension benefits are at 19 months in such cases. By that I mean the Level 1 study that led to the release of Taxotere showed a benefit of 19 months versus those who chose no chemotherapy on average. Some did not benefit and many did, some for much longer periods. In fact I know a few guys that have done very well with their chemo and they have survived well past 19 months.

As I always say, stay positive. Our prayers and thoughts to you and Willie!

Tony
Posted 1/20/2011 4:58 PM (GMT -5)
Mary, my husband's doctor recommended chemotherapy after PSA began to steadily rise after two years on a second-line hormone therapy (Ketoconazole), and a presumed bone met was noted on MRI.  His PSA was approximately 16 when we began chemo.  We have been fortunate that our oncologist is proactive with treatment but I know that many prefer to wait until PSA is very high or symptoms develop. 

Is Willie seeing a medical oncologist experienced in prostate cancer?  I hope that the first priority will be to get the pain under control with appropriate meds and spot radiation. 

For my husband, taxotere has been very tolerable and in fact the side effects seem to have lessened after three treatments.  I pray that Willie can regain strength and that the treatment will be very effective for him. 

Another drug, Abiraterone, is expected to be approved soon which has had dramatic results. 

Sending prayers for you,

DanielleS

Posted 1/20/2011 5:25 PM (GMT -5)
Still hoping and praying for you and Willie. Never give up hope.
Posted 1/20/2011 5:59 PM (GMT -5)
Deareest Mary,

You've remained an amazing advocate for Willie. He's blessed to have so much love surrounding him right now. Enjoy the time with Willie that is still in front of him. He's overwhelmed with mets and can no long hold down nutrition or manage pain without major opiates. Hopefully they can keep him comfortable. All my thoughts and prayers.

God Bless,
Swim
Posted 1/20/2011 6:10 PM (GMT -5)
My sympathy to Willie whom is dealing with some of the worst aspects of PCa and the family too.

Did I ever mention PCa is wild and crazy....I know of a man who's doc had a protocol of chemo first (primary), then followed by brachy seeds & IMRT....last I talked to him, one year ago, undetectable psa. That was a novel protocol. You don't have to  be sick or on the end of your journey is the message.

A generality is yes chemos are most often used in late or end therapies, when others have supposedly been exhausted...alot of docs have different definitions of what is 'alot of different and possible drugs'...if you look into such. Right now cabitzitaxel looks like the more powerful chemo on the block.

Post Edited (zufus) : 1/20/2011 4:15:04 PM (GMT-7)

Posted 1/20/2011 6:15 PM (GMT -5)
Hate to use the "h" word, but have you considered or lined up any hospice care at this point? A good hospice, either at home or at a facility is very well equipped to keep him as comfortable as possible. Just a suggestion.

David
Posted 1/21/2011 9:30 PM (GMT -5)
Thankyou very much everyone.

Casey59, thankyou very much for all of the informative links with great information.
I do not know what they are planning at this point but earlier we were trying to get the doctor to try keto.
Willies' PSA was 'relatively' low and the doc stated that if there was no active disease, it was inadvisable to use chemo. Stuns me, as Willie had a positive node at surgery, how can he not have active disease??

Tony, thankyou for the information regarding your trials and the results. I also believe that earlier intervention is better and am left to wonder why it wasn't offered to Willie. Once the horses have left the barn, it seems almost ludicrous to me but I'm not a doctor. Our family physician, however, is also quite stunned to see this happening to his patient and is totally upset by it. Almost can't believe it, was the phrase he last used.

Danielle, Thankyou for the kind words, it's uplifting to hear that your husband got appropriate treatment and in time. As mentioned, and due to your previous posts to Willie, we did request Keto or anything.
Two doctors at the cancer center stated that it was not needed at the time. Now that it's all over his body, they seem to be, maybe planning something.....maybe, being the operative word. I really appreciate your kindness.

Purgatory, Swimom and Zufus, thankyou all for your continued thoughts of hope and caring.

We love Willie very much, he's surrounded by love but love isn't always enough is it?

Purgatory, they did send in the Palliative care resident today, supposedly to do a nausea/pain consult but I think there was more to it. At least it gave me a chance to vent some of my extreme anger at the lack of care he's received from his so-called medical oncologist. Told the resident that yes, nausea/pain is important but what about the HUGE elephant in the room that NO ONE is addressing??? CANCER!

Asked if his oncologist was just letting him die or had he forgotten the bit about 'first, do no harm'??

I want you all to know how important this forum has become for Willie and I. It's allowing me to vent when I most need to and I know that both Willie and I learned a lot by joining.

Please keep it going strong, differing points of view and experiences of others is how we all become informed patients and patient advocates.

If I sound angry, I'm sorry but I am very tired and angry.......but not at you wonderful people.

I fear that it's all over but the screaming.......

God bless you all, hope I can post that, if not please remove it for me.

Love, Mary
Posted 1/22/2011 9:49 PM (GMT -5)
Mary, Anger is normal and if you need to type in all Caps we understand. I am at a loss for words. I pray for Willie first and you and the rest of the family next. May peace come to all of you.

What a difficult time.

Cajun Jeff
Posted 1/22/2011 9:57 PM (GMT -5)
Mary,

I can't offer anything on the chemo discussion, but I will keep you both in my thoughts and prayers.

I can offer that I have had friends who used hospice, and I can't begin to tell you what help that provided to both my friends and their families. It is a hard discussion to have.

My best to you and your family.

Posted 1/24/2011 12:00 PM (GMT -5)
Had a short conversation with the Cancer Center nurse and the drug would be Docetaxel, given once every three weeks.

We can either go in today, around 4pm or tomorrow/next week.

Willie had a terrible night and we were both asleep when she called but we may just try to get over there for 4pm today.

Will post more later, if we make it over there and get further information.

Take care,

Mary
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