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PET for back tingling and leg/hip pain

jim and i's picture
jim and i
Posts: 1443
Joined: May 2011

We went to the oncologist for a check up today. The oncologist wanted to do a PET to see if Jim's hip and leg pain, and the tingling in his upper arms and back needs rads to keep it from disabling him. Jim however has refused. The oncologist explained that if it goes to far it will be hard to take care of or relieve the pain. But Jim still refuses. I think he doesn't want to know if the cancer has spread. My fear is he will wait to long and suffer or get to the point he is unable to get around. When he can no longer get out and fish I know he will give up. I will always support his decisions but it doesn't mean I will not worry. Please pray for us both.

Debbie

Jan Trinks's picture
Jan Trinks
Posts: 431
Joined: Apr 2009

Hi Debbie:

 

I guess I can understand Jim's refusal, me personally on the other hand would want to know!  I do know and have heard that rads for such as this do seem to help.  I pray for both of you and pray too that Jim's pain and tingling will cease or at least ease off even without rads.  Also, that he can continue to fish.  By the way, do y'all eat a lot fish he catches?  Keep your chin up and as always praying for y'all.

 

Jan (Basketcase)

jim and i's picture
jim and i
Posts: 1443
Joined: May 2011

Thanks Jan

Good to hear from you. Yes I eat the fish and share them with family. Jim is on a feeding tube so he can't eat them.

Debbie

Ladylacy
Posts: 415
Joined: Apr 2012

I know I wanted my husband to have a PET or CT scan to see how he is progressing but he said no.  It has been 9 months since Joe refused further chemo (only option) for the reoccurrence of his 2nd primary and spread of his cancer to his right lung.  It is hard not to worry.  I had finally talked him into seeing about a CT scan but our oncologist said no.  Said that since Joe has refused all further treatment what is the sense of having a CT scan and you know the doctor is right.  Me I just wanted to know how much his cancer has progressed but I guess not knowing is better than knowing and really worrying even more.  

It is hard but the decision is always the patient.  I had thought Joe would just give up, but so far he hasn't although I do see him getting weaker.  You know the tingling could be a side effect of the chemo Jim has taken and the radiation.  Joe hasn't had this problem and thankfully his pain isn't too bad and is controlled by pain medication, at least he tells me it is but at times I see different.  Now his moods are another thing but, and the Hospice nurse keeps asking him, and he keeps saying he won't take anything for depression.

Wishing you the best -- Sharon

 

hwt's picture
hwt
Posts: 1655
Joined: Jun 2012

Prayers coming to your family. I too, would honor his request. With that being said, do you think he would be open to some physical therapy? Perhaps that would help, especially if it is not the cancer.

jim and i's picture
jim and i
Posts: 1443
Joined: May 2011

Probably not. The oncologist seems to think it is due to the cancer spreading and deteriorating the bones. Can't sau for sure without the PET. I just hope it doesn't get to the point they can't control the pain , which they say is a possibility.

Debbie

jim and i's picture
jim and i
Posts: 1443
Joined: May 2011

Probably not. The oncologist seems to think it is due to the cancer spreading and deteriorating the bones. Can't sau for sure without the PET. I just hope it doesn't get to the point they can't control the pain , which they say is a possibility.

Debbie

debbiejeanne's picture
debbiejeanne
Posts: 1920
Joined: Jan 2010

debbie, i'm sorry u r faced with this.  i will b keeping u and jim n my prayers.

God bless,

dj

Skiffin16's picture
Skiffin16
Posts: 8024
Joined: Sep 2009

You have my thoughts and prayers..... Hopefully with a little time to accept and process the PET is for the best, Jim will come around a little...

John

Charles77066's picture
Charles77066
Posts: 12
Joined: Aug 2012

I had pain in my shoulder and tingleing all down my arm to my hand. It was caused by a bad disk in my neck.

katenorwood
Posts: 1737
Joined: May 2012

We patients sure put our caregivers through the ringer don't we.  I'm not making light of Jim's situation, I just really do understand his position.  I have to disagree with your oncologist though.  A PET or nothing at all ?  A CT/MRI will show mets just as well.  And for tracking of his condition to enable him to have the best quality of life he deserves should be the onc's obligation regardless if Jim wants anymore tx's or not.  It could well be mets., but what if it's something less than this ?  You know I'm pulling for you both, and will keep you in my thoughts and prayers !  Katie

jim and i's picture
jim and i
Posts: 1443
Joined: May 2011

Hey Katie,

Jim cannot do an MRI, he has a pacemaker. He doesn't want any more CT scans either. He says he will wait until pain is unbearable. Doc said only problem is it would be a lot harder to treat.

Debbie

CivilMatt's picture
CivilMatt
Posts: 2649
Joined: May 2012

Debbie,

I am sorry to hear of Jim’s pain.  I would really enjoy wetting a hook with him.

My best thoughts are with you both.

Matt

Hondo's picture
Hondo
Posts: 5448
Joined: Apr 2009

 

Sorry to hear about Jim having more pain and problems, I know it is hard but I do respect his dissension. As with me I put it all into Gods hand from here on, I still do what I need to do in trying to stay as healthy as possible and I will continue to do the things I love to do, but for me no more radiation of any kind. I hope I get the house next to you and Jim in heaven so we can look back at this life and laugh at all we went through.

 

God bless and keep you both.

 

Still in His Work Shop

Tim Hondo

jim and i's picture
jim and i
Posts: 1443
Joined: May 2011

Thanks Hondo, I hope you do to.

Blessings

Debbie

Ruben and Jude's picture
Ruben and Jude
Posts: 152
Joined: Apr 2013

Hi Debbie

Ruben is experiencing numbness and tingling in his right arm. They did an x-ray and found it's most-likely due to degenerative changes in his neck (possibly from the radiation), but possibly due to age. I haven't had radiation to my neck, and I have DJD there too. Aging sucks!!!

I am not only an oncology nurse, but a hospice nurse as well. I see such a difference in people with terminal illnesses once they come onto hospice.  Many times, their quality of life improves, they relax and live much longer than the doctors thought they would. I've even had to discharge patients from the hospice service as their symptoms lessened (improved) and they were no longer deteriorating at the rate they were expected to! Many of my patients were on hospice for 2 - 5 years. Of course this is not the same for every case,  and a lot of it is mind set.

I am saying a prayer for the two of you, and I certainly understand how you may feel. My husband just completed treatment for H&N c 4 months ago. Worry..... yep.... I think I always will.

Stay strong in the LORD. God's Blessing coming your way.

Jude

jim and i's picture
jim and i
Posts: 1443
Joined: May 2011

Thank you so much Jude. Jim is getting a little more tired each day. His pain on the left side is worse now but he refuses the pain meds until bed time. Your words encouraged me and your prayers are appreciated.

Debbie

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