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Update on my father...

Noniu
Posts: 45
Joined: Apr 2010

My father is 80 years old, prostate cancer with bone metatesis, refused chemotherapy, was hoping to get Provence, while waiting payment from Medicare approval he became ineligible, did not pass eligibility criteria.He is on Lupron every 4 months. On March 31st my dad's Oncologist recommended a newly approved medication to prevent bone complications called XGEVA. After the first dosage he had no pain, did not have to take pain medication. On April 9th he had no appetite and started to feel nauseous. The following day at night a severe pain returned on his cervical and torax area and was unable to hold anything on his stomach, we did not sleep that night at all. Next morning I took him to the emergency room, he was admitted, series of testing was done, the MRI's showed he has stenosis on C4-C7, a mass on T1-T2. The hospital's Neurologist and Neurosurgeon were consulted,no surgery was recommended. The Radiologist/Oncologist got in touched with dad's Oncologist, who treats his cancer. The both agreed that my father needed radiation. Before radiation his legs were numb, unable to stand or walk. So far he has received 3 radiations, pain continues and has not regain his appetite,still unable to stand or walk and he is very week. Monday he will be transfered to a Rehabilitation Center for therapy so he could get stronger and hopefully walk. We do not know exactly what to expect from the radiation, hope it does not do to much harm. Many thoughts go through my mind,I wonder how long his has, how much more damage this illness will cause? Dad still refusing chemotherapy, no one can convince him about it. Does any of you have refused chemo, have bone metatesis, how is progressing, pain management, etc.? Please, give me any input of your experience during this terrible journey. Thank you...

VascodaGama's picture
VascodaGama
Posts: 1508
Joined: Nov 2010

Noniu

I am sorry to hear about your fathers’ conditions. The stenosis on C4-C7 and the “mass” (cement) on T1-T2 may be the cause for the numbness in the legs preventing him to walk. Surgery is normal in those cases but the neurologists have decided not to operate on him maybe because of the advanced cancer status and his age of 80.
Radiation can improve his status as well as relief pain. The dosages are small so you should not be so worried about increased harm.

Xgeva is a drug approved at the end of last year and it is supposed to “replace” another drug called Zometa which have been around for some time to treat advanced cases of metastasis at bone. In trials Xgeva have shown to be as good as Zometa but not to everyone.
The side effects of Xgeva are reported as nausea, hypophosphatemia (low phosphate in the body) and fatigue. These side effects may be causing the symptoms seen in your father, such as the loss of appetite. The cancer itself is known to cause loss of energy and your father needs help (intravenous) to regain that strength for standing.
I read that doctors change drugs once they become ineffective or cause nasty symptoms. Radiation to the bone will kill some cancer and alleviate pain but I believe as a laymen that he should continue taking a bisphosphonate changing from Xgeva to your fathers' previous Zometa (it caused him kidney complications) or other, and only stop taken it if complications do not subside.
http://www.medilexicon.com/drugs/xgeva.php

In his advanced status it is difficult to know if chemo would do well. Nevertheless, chemo is part of the protocol in treating PCa patients of high risk. The Rehabilitation Center is well “equipped” and the staff is trained to handle patients at the status of your father. I hope the place is closer to your family so that you can visit him frequently and give him affection.
Hopefully he will survive this “bumpy” period on his illness and will return to the comfort of your home the soonest.

I wish him a quick recovery of his status.
VGama

Kongo's picture
Kongo
Posts: 1167
Joined: Mar 2010

Noniu,

I am sorry your father has to endure this situation with his cancer progression. As I am sure you medical team has explained, there are virtually no treatment options at this point which offer any real hope to reverse the progress of his cancer. Once the cancer has metastasized in the bones there is little medical science today can do except to offer pallative treatments that will make his physical sysmptoms less severe. Radiation has been shown in many cases to greatly reduce the pain associated with bone mets.

I sense a degree of frustration and helplessness in your reaction to your father's refusal to take chemotherapy as an option at this point. Frankly, if I were in his shoes I would do the same thing. I am sure he has known friends or family who have undergone this treatment and the frequently gruesome side effects associated with it. Given your father's age and other potential health issues, his decision to avoid this ordeal at this stage in his battle is understandable. I recently read where more than 75% of cancer oncologists would not recommend chemotherapy for a family member.

I hope that the radiation eases the pain I am sure your father must be suffering.

K

2ndBase's picture
2ndBase
Posts: 220
Joined: Mar 2004

I have many large tummors throughout my body as a result of bone mets. I have refused all treatment and joined the hospice program 11 months ago. I did so to avoid the problems your father is having and have no regrets whatsoever in doing so. Hospice will be able to control his pain as long as he is willing to take the vast quantities of pain killers it takes. The meds I take do a great job in controlling the pain as long as I stay ahead of it. I am still able to work at my two jobs and play golf and plant a garden. I exercise every day in my hot tub which helps keep my strength up. The steroids (catabolic) I take have a side effect of tearing down muscle tissue so the exercise is so important to me. The steroids are the only drug that in cooridination with morphine and vicodin give the pain relief that is needed. This was told to me by the head oncologist of my hospice program. Hospice is totally free of cost, they come to your home and your staying out of pain is their goal. Why put yourself through radiation with its side effects and high cost when you can take pills that can be delivered to your home? Its not easy to admit you will die but at some point you realize the treatments are not going to save you. Ask your father if he is ready to sign up for hospice and his oncologist will get him into the program. His quality of life will be enhanced.

bajusbeach
Posts: 9
Joined: Sep 2009

I feel as though you would be a good person to talk about this. My dad got diagnosed in 2005 with prostate cancer. He had it removed in 2006 and had lurpon after that . In 2009 he was daignosed with stage IV advanced mestatic cancer. He had three spots on his bones and one went into his whole shoulder. he had radiation for that and it was sucessfull.In 2009 in the fall he had an orchioctomy to slow down or halt the testosterone in the body. He moves closer to one of us in July of the next year and before he moved he had a bone scan and had spots all over his bones. LAst Demceber he started having some painin his shoulder blad and side slightly. they did a bone scan in jaqnuary 2011 and saw that he had some tumors on his shoulder blade so the dr. put him on casodex. he will not do chemo( I don't blame him) they also found his gallbladder was trying to pass stones. he has had gastor issues for aht epast couple of year but since his surgery it has been worse and his shoulder bald and side are swollen. The Cancer dr,. checked him April 5th and noted that his shoulder blade was bothering him now and sent him to a pain management center. it is all swollen the size of a dinner plate and since i have been here in one week it has gotten bigger. they prescribed him vicoden andything more than that and he acts like a drunk. it takes care of the pain 80% for about 4 hours or 5 . his skin it tender to the touch where it is swollen but no rash etc. he gets to see his cancer dr. may 3 and cannot get in any sooner. he has lost weight since last july from 268 to 242. he is nauseaous alot and eats a little during the day. i am a frank person so i would like you to be frank with me . i am up here giving him companionship and help and my sister too. i am staying with him at the apt he has . we feel like we are going to need to talk to him about moving in with my sister and her family at some poiint. when is hospice good to start with ?
Anna

2ndBase's picture
2ndBase
Posts: 220
Joined: Mar 2004

Starting hospice care means giving up totally on any further treatment. It requires an oncologist to sign you up for the program.
A hospice nurse will visit as often as deemed necessary. They ask a lot of questions and treat the pain, always trying to keep ahead of it. Counseling is available as well. There is no cost to the patient at all. I have been in the program nearly one year and am very pleased with my journey to date. I wish your father all the best.

bajusbeach
Posts: 9
Joined: Sep 2009

my prayers are with you - my father is started down the same road so it seems
Anna

Noniu
Posts: 45
Joined: Apr 2010

I am very sorry about your dad. I know there is no cure at this stage, today there are many treatments available to stage iV.

My dad has been struggling with his cancer since 2001.

Diagnosed as intense acute, subacute and chronic inflammation with urothelial ulceration, interstitial hemorrhage and mildly atypical urothelian hyperplasia; posterior wall

Infiltratin moderately differentiated prostatic adenocarcinoma, Gleason's Score was 3 + 3 , with perineural invasion, involving most pieces, roughly 20% of the tissue; righ. Also present chronic prostatitis.

Fibromuscular hyperplasia of the prostate with moderate chronic inflammation; left

Perhaps, his diagnosis today he would have a better chance to survive longer?

Had seed implant in 2002, cancer return in 2009. No new treatment has worked for him, he was hoping to get Provenge, but he did not meet criteria to receive it. He was administered one shot of Xgeva and he got ill before the 2nd one, at present, everything has been stopped, however, he did get radiation in his spine, a mass was found on his T1-T2. Thanks God the pain in under control. We are hoping he could walk again, only time will tell.

My prayers are with you too, do not give up, many treatments are available today, whatever did not work for my dad it might work for yours. Never give up, have faith.

If you would like us to share info, do not hesitate to write, I will reply as soon i can...

God bless !

Noniu
Posts: 45
Joined: Apr 2010

Good morning!

I am very sorry I was not able to respond your messages, I have been very busy with my dad illness, I work and also take care of my mom with Alzheimer.

I would like to thank Vascodagama, Kongo, 2ndbase and Bayusbeach for all your advices and support on my father's illness.

Two weeks ago my dad was transferred to a rehab center, 3 days later he was back in the hospital with an infection on his urine and esophagus; lots of pain when he tried to swallow any food. More testing were done and an endoscopy. He stayed in the hospital for another week then transferred to another rehab center because he needed intraveneous antibiotics to combat the infection. At the present he is stabilized, lost about 20 pounds, his hemoglobin is very low, gets Procrit shots 3 times a week, physical therapy 6 times a week, he still cannot walk. I do not know how long he will be staying nor the outcome? Hope he can at least walk with a walker so he could have some independence.

Anna, if you would like to exchange info, feel free to email me, I will reply as soon as I can.

Again, my sincere thanks for all your advices and support.. God bless you all...

VascodaGama's picture
VascodaGama
Posts: 1508
Joined: Nov 2010

Noniu

I am glad to know your father has recovered for a while. When fit, he may try a new drug Abiretarone just approved which is like a “substitute” to Nizoral (ketoconazole) but with much lesser side effects.
There have been trials and the results are excellent to advanced cancer patients. The drug also have side effects but I believe that your father will do well with it. You can read about that in these sites;
http://prostatecancerinfolink.net/2011/04/28/fda-approval-of-abiraterone-some-interesting-notes/
http://www.jnj.com/connect/news/all/zytiga-abiraterone-acetate-receives-fda-approval-for-treatment-of-metastatic-prostate-cancer-after-priority-review

As you comment; Never give up.

Wishing your dad a quick recovery.
VGama

Noniu
Posts: 45
Joined: Apr 2010

Once again my dad is in the hospital. Last Tuesday had an appointment for CT Scans and MRIs. While in the MRI machine he was kind of restless, therefore, imagines were not good. The Radilogist called his Oncologist, both decided to admit him, the studies would be done under sedation. The tests showed he has two masses, one on the area of right shoulder blade and pelvis. Also his spinal cord canal is very narrow, a cord compression which is causing him not to walk. Tomorrow he will have a consult with a Neuroglogist. Radiation was started immediately and now his able to move his legs better, can sit up, he says he feels much better.

Vgma, thanks for all you suggestions and best wishes. Your are very knowlegable in this area. His Oncologist prescribed Zytiga, it has been approved. Now we have to wait until he gets out of the hospital. He is still refusing chemotherapy, no one can convince him of getting it. He says he has no cure. I hope he could benefit from the therapy hes is getting now and Zytiga.

Thanks,best wishes to all...

Noniu

Noniu
Posts: 45
Joined: Apr 2010

Once again my dad is in the hospital. Last Tuesday had an appointment for CT Scans and MRIs. While in the MRI machine he was kind of restless, therefore, imagines were not good. The Radilogist called his Oncologist, both decided to admit him, the studies would be done under sedation. The tests showed he has two masses, one on the area of right shoulder blade and pelvis. Also his spinal cord canal is very narrow, a cord compression which is causing him not to walk. Tomorrow he will have a consult with a Neuroglogist. Radiation was started immediately and now his able to move his legs better, can sit up, he says he feels much better.

Vgma, thanks for all you suggestions and best wishes. Your are very knowlegable in this area. His Oncologist prescribed Zytiga, it has been approved. Now we have to wait until he gets out of the hospital. He is still refusing chemotherapy, no one can convince him of getting it. He says he has no cure. I hope he could benefit from the therapy hes is getting now and Zytiga.

Thanks,best wishes to all...

Noniu

VascodaGama's picture
VascodaGama
Posts: 1508
Joined: Nov 2010

Noniu

It seems to me that your father is in good hands. His doctor(s) is following the right standards. We just have to hope that the situation improves.

I wonder if your dad is on a different drug to control cancer at the bones. He did not do well with Xgeva (denosumab) but a bisphosphonate (ex; fosamax, etc.) could help in improving is bone lesions. There are other monoclonal antibodies type of drugs similar to denosumab that working in pair with a bisphosphonate are able of directly “killing” the metastases and helping in the “reconstruction” of loss bone. You could inquire with the doctor on any possibility for your dad to get such combi.
Like Zytiga, these are targeted medication therefore requires “vigilance”. These types of drugs interact with other medications so that dosages and side effects must be constantly monitored, but the benefits are high in advanced cases.

I would recommend you to get a copy of this recently published book “Beyond Hormone Therapy – Options for Prostate Cancer Patients” by Dr. Mark Moyad (just got my copy). This is a good reference book for standard and newer drugs to control prostate cancer (it includes Zytiga too). There are details on the second-line hormonal treatments still in trial and references to chemo-like drugs, which your dad may find interest in reading, therefore helping him in his phobia for chemotherapy.

In a recent conference in Stockholm (Europe) it was announced that one of those trials for drugs treating metastasized cancer in bone, was “interrupted” due to the fact that the drug (Alpharadin) was found very effective in the combat of cancer (while still in trials), therefore allowing the placebo group of patients to receive it as well. You can read details in this link; http://csn.cancer.org/node/227012

Dr. Chris Parker, one of the panellists and a clinical oncologist, comments this; "This is the first drug targeted to bone metastases in prostate cancer to improve survival,"

In another interview it says this; “Dr. Parker said in an interview that his preference would be to combine radium-223 with abiraterone acetate (Zytiga) because both improve survival and are extremely well tolerated, but they work in completely different ways”.
Here is the site;
http://www.oncologyreport.com/single-view/radium-223-could-alter-metastatic-prostate-cancer-management/2eee3b6b5f.html

I wish your dad and the whole family peace of mind.

VGama

Noniu
Posts: 45
Joined: Apr 2010

On my last post I let you guys know my dad was hospitalized for some testing. The testing were done. The MRIs showed he had a mass on his right shoulder blade, pelvis and the spine full of cancer. He was seen by a Neurologist,his recommendation was radiation and chemo. WHile in the hospital radiation was started and nine days after been in the hospital he was transferred to a Subcute/Nursing Home near the hospital to be transported daily to complete his radiation sessions. Last Wednesday was his last radiation, he was very happy because everything went well and had no pain at all. But he was complaining that his was sleepy,tried and pain on his throat. Yesterday when I visited him his voice was different, while talking to us he seems lethargy . We attributed side effects from radiation. When we left he seemed to be okay, except his body seems to be very cold. This morning around 6:37 AM the phone rang. It was the Nursing Home calling to let me know dad was not responding, they had called 911 to take him to the hospital.

When I arrived to the emergency room he was sedated,, with a fever, still not responding. It was very difficult to draw blood from him, the Emergency Room Doctor have draw it from his neck. At first the Doctor thought he had a stroke or the cancer has spread to his brain. A CT Scan was done, it showed no stroke or cancer. But, he has neupmonia and blood infection. It seems he caught it at the hospital... He is very ill, his blood pressure is very, very, his acid levels very high and kidneys not work much. I do not know what is goind to happen, I wish he could get better, we need him.

Vgama, thank you for your suggestions and recommendations. Zytica has been waiting for my father at home, it was delivered 3 days ago. He was waiting to come home to start taking it. He has been on Lupron and Zometa.

I will keep informing on my father's condition, please, keep him in your prayers.

Thanks,

Noniu

Noniu
Posts: 45
Joined: Apr 2010

Doctors said there nothing else to do for my father. They have done everything they could. I just waiting for my daugther to arrive from Boston to disconnect him from the respirator. The cancer has not killed him, but a bacteria on his blood did. Please, keep him on your prayers.

Best wishes in fighting prostate cancer. Thank your for all your suggestions and support.

God bless you all!

Noniu

mrspjd
Posts: 688
Joined: Apr 2010

So sorry to read of your father’s deteriorating condition. It appears that in addition to advanced metastatic PCa, your father may be suffering from an advanced case of sepsis, that in certain, stronger, patients, may be treated with powerful intravenous antibiotics.

May you find peace and comfort in the many special memories of better times that you will always cherish. Your father is truly fortunate to have such a caring and loving child as you have been. I’m sure he is very proud of you and grateful that you have been at his side throughout this ordeal. You and your family are in my thoughts.

mrs pjd

lewvino's picture
lewvino
Posts: 1004
Joined: May 2009

I'm so sorry to read about this time of sorry in your family. It is an honor that your father had such a carrying daughter as you are.

Lewvino

hopeful and opt...
Posts: 1278
Joined: Apr 2009

I am sorry to hear of your Father's condition.
My prayers are with him, and his family.

VascodaGama's picture
VascodaGama
Posts: 1508
Joined: Nov 2010

Noniu

I have not enough words to express my deep sorry to your dad’s health deterioration. Particularly after his relieve from pain and the happy moments of hope he shared with you. Your care for him is inspiring and many survivors here are in debt to you for your posts and helpful information provided.
Your father couldn’t have a better daughter.
I have just arrived from a trip to Fatima where I prayed for her divine guidance and strengths to us all, in dealing with the ordeals of our disease.

You and yours are in my thoughts.
VGama

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