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Posted 3/26/2013 4:50 AM (GMT 0)
My husbands ct scans before he started the radium223, showed extensive bones mets including his skull. The skull has never shown before but it was in C5 and of course extensive in spine and so many other places. He has started having headaches on front and right side of head, that causes some pain, tingling and numbness down fight side of face and into jaw. Doctor order an MRI April 7th, mentioning that the cancer in his skull may be causing expansion of bones in skull causing pressure on the brain, and possibly in the brain..and that either has happened head radiation would be necessary.
Has anyone here heard of this or expierenced this?
My first thought...no radiation to the head,brain or whatever.
The radium223 was predicted to work for 2-3 treatment (monthly) only just like every other treatment. But he just seems to be going down hill, losing weight every week, too nauseated to eat and drink what he needs to even maintain and scared to be alone for any amount of time. I just feel like we are coming to his end, and that with his fear of being alone, he feel and knows in his heart things are not good. He even asked to me to look into the best hospice for in home treatment in our area......then today he told our dog he plans on getting in the pool with him this summer...I have so many mixed emotions and so exhausted.
Any help and ideas would be greatly appreciated..Jitters
Posted 3/26/2013 9:40 AM (GMT 0)
Join www.hrpca.org  (at yahoo groups-find weblink), the founders family the Hansens's run this website, Howard dealt with brain mets and radiations two different times....they would know plenty about the details and you might find that information useful. Howard Hansen battled PCa for 17 years and was very informed on various protocols and did many of them himself and studied them extensively for years and years. [email protected]  (????)  They have interactive patients, discussions on Hrpca patients from all around the world....can be very informative and enlightening stuff.
Posted 3/26/2013 11:52 AM (GMT 0)
Bob,
thank you for being you. Todd
Posted 3/26/2013 1:13 PM (GMT 0)
Jitters, I don't have any answers or advice. But I wanted you to know I can appreciate what you are going through (not to mention your husband of course). It is so hard and takes such an emotional toll. You know all the basics: take one day at a time, etc., all good advice, but the uncertainty and fear are the worst of it all. I know you're scared. I've been there. You'll keep on plugging because you have to and because that's who you are. There will be good days and bad days. You will get through this. You will get through this. No matter what happens. You've heard it before: never, ever give up hope. There are smart doctors out there (and smart people in here) who will have good suggestions and options. Your husband is so very lucky to have you walking this path with him. Who could ask for better than that.
Posted 3/26/2013 1:34 PM (GMT 0)
his doctor should be able to tell you frankly, if it is nearing time to consider a hospice situation. probably be a good idea to start looking at what is available in your area, so that when the time comes, you won't have the added pressure of trying to decide at an emotional time. hospice can add so much in terms of quality of life and dignity to the person involved and their family.

I hope his doctor is closely monitoring his pain situation, and keeping him as pain free as possible, that is another important quality of life matter too.

I am hoping for the best for you and your husband,

david in sc
Posted 3/27/2013 12:17 AM (GMT 0)
Jitters, I am so sorry - bad bump. Hugs. Last week asked Dr. about how to be sure he didn't have brain mets. Just mentioned many of the symptoms you mentioned and that since he didn't have any of those, not to worry. Also my Dr. discussed that there are Palliative care specialists that will work with patient and family; but have to be in the hospital with the ones she knew. Suggested I check with Oncology group if they had someone like that there. Thoughts and prayers. Keep us updated.
Posted 3/27/2013 2:53 AM (GMT 0)
Jitters,

We are in the same place. Partner has mets on his skull, and other places. Losing weight, sleeping all of the time, and yet supposedly his PSA is coming down. He is on morphine and other drugs which is making him depressed and loopy. He got so upset yesterday whene couldn't remember his bank PIN. I look at him and he is so thin. I am trying to make food he likes, but he eats every little, and right now we are having a cash flow problem. I am trying so hard to not get hysterical myself, wondering if we are moving towards the end. The doctor has not said so, but one can't help but catastrophise. We see his oncologist next week. I too am very tired, and really sad. Trying not to let him see me cry so much.

Take care, and feel free to vent if needed.

Susan

Posted 3/27/2013 3:04 AM (GMT 0)
Jitters,
Sorry about your husband's condition. I can't imagine how difficult it is for you and your husband. I can't offer any advice but I can hope and pray for you both. Stay strong and don't give up hope.
Posted 3/27/2013 3:17 AM (GMT 0)
Radsgrrl22, Jitters, Zimac, Nhwife, Bud.....just all of you so sorry. It is so hard. Don't know whether to continue to hope or if that is denial, and you know you have to try to be strong. You don't want to make it worse for them and if there are family members, for them either.

Agree with Ed C. Prayers.
Posted 3/27/2013 3:36 AM (GMT 0)
Dear Jitters: my husband went through the same thing your husband is. My husband had bone mets through his spine, ribs, legs and arms. I am sure he had them in his the bones in his face as he had one droopy eyelid that would come and go. He had no feeling in his face from nose bottom lip down so had to be careful with hot foods also he would bite the inside of his mouth quite often.

He was very clingy the last while , not that I minded I wanted to spend as much time as possible with him.

The last month he spent in palliative care at our local hospital as he lost all feeling from the waist down. It was very difficult not having him at home, but we both knew I couldn't give him the kind of care he needed.

It was a difficult time, but yet it was a close time for us. I guess the one thing I can say is I didn't want to have any regrets so did the best
This was my experience . My husband passed away in November after a 5 year battle. He was 58 years old. I miss him every day .

I don't know if this answers some of your questions, but hope it helps.
Posted 3/27/2013 3:39 AM (GMT 0)
kak,

reading your story really touched my heart. hope you find some peace again and solace.

david in sc
Posted 3/27/2013 4:57 AM (GMT 0)
Thank you everyone for your thoughts, prayers and concern. Today I was alone the majority of the day,what an exhausting emotional day it was. Dinner for him was 2 plain chicken wings, certainly not enough substance but all he could manage to eat.
I think if the MRI shows mets in brain and he refuses radiation the doctor will do doing everything he can in conversation to convince him to do it.
My husband also wants one more trip back to CT, a 5-6 hr non stop flight after his April treatment if only for a week to 10 days. I'm sure mentally it would be good, BUT physically, the last one was horrific on his body. If he ended up entering hospice there it wouldn't be the end of the world BUT not our plan.
I guess I just need to wait for MRI results, and I will push again to watch the MRI in progress, so I can see the images for myself. I'm not a doctor but cancer is pretty easy to recognize. I do believe his oncologist might very well say no traveling...
Posted 3/27/2013 2:12 PM (GMT 0)
I wish there was more that I could do for you. Look after yourself as this is a difficult time and your health is important as well as his.
Posted 3/27/2013 4:31 PM (GMT 0)
Jitters, glad you have a chance to try Alpharadin before it is officially released. It shows good results in clinical trials, and again, AVERAGE OS benefit is 3 months, but that means some men got much longer survival time. Although you have mixed emotions, you are doing exactly the right thing - supporting him along the difficult way. Wishing you inner peace and strength. Hugs...
Posted 3/27/2013 9:28 PM (GMT 0)
This just reminds us how important our significant others are to us. Some of us go through so much more than others. No two cases are alike.

My heart aches for those and their love ones that are still fighting this darn disease!

Hugs to you all,
Bill
Posted 3/29/2013 10:33 PM (GMT 0)
Dear Jitters, Jerry had the same thing. Extensive bone mets, spine,ribs,hips,legs, skull. He developed sharp pain on left side of his skull and his left eye seemed very red and irritated and bulgy. He was in hospital at this time with bowel issues. Lost weight at an amazing rate, was so thin. His radiation oncologist and medical oncologist recommended five radiation treatments of spine and skull and the treatments helped the pain and swelling. MRI had shown tumours behind his left eye and extending to the brain. Jerry was on blood thinners because he had developed a large clot in his left thigh and two days after we returned from radiation they believe he had a pulmonary embolism and he passed away Nov. 17, they were able to keep his pain under control and he passed peacefully. Diagnosed in May 2010. He was 66 and we miss him terribly. The radiation did help with the pains he was having in his head. He too had numbness on the left side of his face and eating was a problem because of that. That was improving after the treatments. If not for the blood clot I believe it would have given him more time. Stay strong, I know it's hard but never give up. Where there is life there is hope. Xoxo
Posted 3/30/2013 4:29 AM (GMT 0)
Silverlace,
Our husbands sound so much alike, even same age. Mine has same bone mets. His PSA is currently 958, even though he is on Radium223. Has been as high as 1100. MRI is Monday on skull, making sure I get to watch, it just helps me understand how many lesions there are.
Posted 3/30/2013 9:25 AM (GMT 0)
Hopefully the MRI will give you some answers that will help you both with your decisions. It is so hard to be a part of this and not be able to do more for them, just being there with him will give him some peace of mind. Try to take care of yourself too which I know is easier said then done, right now he needs your strength and love. Wishing you both the best. I so hate this disease!!!
Posted 3/30/2013 9:39 PM (GMT 0)
Kak & Silverlace,
I am so sorry that you lost the battle for your husband's lives, but don't leave the women on this forum who need all the help that they can get to win the war. My heart bleeds.
Bill
Posted 3/31/2013 12:46 AM (GMT 0)
Gunfighter is right, we all need each other. We just had a family discussion with all our four kids for the future last days. Tough.
Posted 3/31/2013 12:46 AM (GMT 0)
Gunfighter is right, we all need each other. We just had a family discussion with all our four kids for the future last days. Tough.
Posted 3/31/2013 3:02 AM (GMT 0)
Jitters,
My husband was diagnosed with brain lesions back in Jan. 2013. Since only 1 % of the population develops brain mets, they never scanned him for it. We were told that since men are living much longer now they are beginning to see more brain metastases. He had two tumors removed from his brain because they began to bleed (prognosis was poor if they weren't removed). Afterwards he had 10 days of whole brain radiation. He is currently recovering from his surgeries and the WBR.
I must admit it hasn't been an easy road but my husband is still enjoying life. There are men who have enjoyed a good QOL although they have had brain mets.
If you would like to discuss anything further, please feel free to contact me through email and I will give you my phone number. I know this is an extremely difficult time for you.
Wishing you the best results possible on Monday.

Zimac
Posted 3/31/2013 1:59 PM (GMT 0)
All of you ladies are in my thoughts and prayers.

So thankful for this web site where everyone has someone to lean on and help each other...
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