Wife of Stage IV husband

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4/20/2014 8:52pm
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Replies: 5

My husband (60yrs) dx stage 4 end of Nov was in his small intestine, lung and brain. Have had 3 gamma knifes -last MRI -only 4 tumors left (out of 9) . Has 3 tumors removed from small intestine in Dec-took him a long time to recover was going to go back to work Feb 3. Started IPI in JAN It didnt work.  he had multiple seizures on Jan 27--scared me to death-took few weeks to get over this too. So no work. In March SOB and 2 bronchoscopies. Tumor in RLL one bronchus cleared-the othe main bronchus tumor is very hard. Having 10 days lung radiation  Tumor size of baseball. Meanwhile found 1 vertebrea fractured and will do kyphoplasty to put cement in the spine- cancer not in spinal cord at this point. Also will need some radiation on the spine. Also found mets in 1 rib and possibly on the liver and adrenal gland. Will have pet scan on Thurs. Am scared to death--dont know what to do-he is having such a rough time with fatigue-no energy-forgeting things-no appetite-he just want it to end. I am afraid with all this radiation he will never feel good again. I almost forgot will have bracyy therapy for 3 wks for his lung..Anyone had similar experience ? any advice- we have great DRs at UPMC/Hillman Cancer Center He doesnot have the bfar mutation. I need someone to talk to that is going thru this. All family and friends smpathize offer help but they dont understand-I am tired of questions and the "im sorries"    Just need to someone in the same boat--I dont think my husband has a lot of time and i feel helpless.........Thanks to anyone who can respond Pam.

Anonymous - (4/20/2014 - 11:47pm)

So sorry  that you are going through this.  My husband is stage 4 and has been through chemo, radiation,cyberknife, yervoy and now is starting PD-1.  In the caregiver support group I attended someone was getting a lot of suport from hospice even though her husband may not be terminally ill. They have counselors available for different situations, not just terminal cases.  I would suggest finding support groups. My husband and I also attend a melanoma group.  There are lots of resources available and your physicians should know what is available where you are.  Ask for help from friends and family.  Be specific about what you need.  People want to help they just don't know what to do.

Maureen038 - (4/21/2014 - 7:14am)

Pam, 

   My husband is stage 4 and is in the ipi/nivolumbab trial at UPMC. We travel up there every two weeks usually on a Monday. If you ever want to meet, let me know. I usually try to walk around a nearby park just to get some exercise to help with the stress. It's awful as you know. Every time we go up there, we have to see if his blood work is fine to get the okay for the nivolumbab. I'm in two support groups which is a big help. One is a cancer support group and one is a woman's support group. Family and friends have helped, but only a few people truly know what to do. I find it's usually people who have been through a tragedy to be the biggest help. Try your best to get outside and exercise. Meditation and prayer help me too. Take care and my thoughts and prayers are with you!

Maureen

Pam S. - (4/21/2014 - 7:21pm)

Hi Maureen, Thanks so much for responding. Would love to meet-but not sure what day we will be there and not be getting procedure/appts/radiation all in one day, because we live bout 1 1/2 hrs away. Can you tell me where your husbands melanoma is ?  Every time we turn around something else pops up. When was he diagnosed ? Sorry to ask so many questions, but I wonder if we have had any similar situations.

Thanks, Pam

Maureen038 - (4/22/2014 - 7:41pm)

Hey Pam,

    If you read my profile you can see my husband's journey. This is his third clinical trial. His melanoma started in his left toe. He is Braf negative too. He has had HD interferon, ACT at NIH and now the ipi/nivolumbab trial. We will be there this coming Monday. He has nodules in his lungs. We live in md which is 4 hours away from Pittsburg. Does your husband see Dr. Kirkwood? You can email me privately and see if there's a chance that we could meet. Take care!

Maureen

Pam S. - (4/22/2014 - 8:38pm)

Hi Maureen,

My husband had his 8 out of 10 external radiation on his RLL. He has been feeling terrible since. Just recently ha has been doing some "unusual" things. Like putting on only one shoe or reaching for things that arent there, forgetting a lot, but he seems to realize it.His last gamma knife was in March  and MRI few weeks ago 3 more tumors gone (only 4 left !) so today the radiol/oncol did another MRI says he sees some swelling, but results arent done yet and wants us to see Dr.Monaco(neuro surgeon) (think hes with Kirkwood)  in am. So here we go again, On Monday 5a we have kyphoplasty on T7 due to fracture that may be the cancer or due to the cancer at Shadyside. Not sure how he will feel after-if schedules permit maybe we could meet that morning. My cell is 740 381-7309. So glad your husband got in a trial.  Pam