Chronic headache post cervical vertebral radiation - 1254942

Thank you Dr West and everyone for your thoughts. His headaches have not responded to any of his PO meds. The headaches are increasing in intensity. IV meds were given with his chemo last week for the headache pain but the relief was minimal, few hours. I will call his doctor and hope that either pain patch or IV meds will be started. It is so hard to believe that overnight everything is changing. I still cling to the hope that this is a side affect from his radiation but as a nurse I know that L.C. Is a possibility. I also wonder if the avascular necrosis of his jaw has exacerbated. Pain relief is my primary concern. He is extremely reluctant to try the pain patches as he had a very bad reaction to the pain patch when he was originally diagnosed with NSCLC adenocarcinoma stage 4 with mets T 10 three years ago. He never complains but today he admits the pain is worse and it's time to try other pain relief measures.
Do we repeat the brain MRI? When do we decide that he needs a lumbar puncture? His pain will need to be controlled before he could tolerate any diagnostic tests.
Again thank you for you thoughts.

He was put on steroids a week ago. The headaches started shortly after he began the cervical vertebral radiation but they were mild in the beginning. It has just been the last two weeks after completing radiation that the intensity has changed. On Friday his oncologist said he thought it could be side effects from his radiation, possibly soft tissue, bone or even nerve trauma. If his pain got worse we would try the pain patch next. I am calling this am as I know he is trying to be strong but I have to get him relief. The oral meds are not working. Over three years he has never complained, so fortunate he has really only had to manage fatigue and moderate pain. He is the patient who keeps everyone smiling at chemo and radiation with his great sense of humor and gentle personality. I am concerned but trying to keep my professional mind functioning. As a nurse, wife, mother, caregiver, I strive to allow his independence but know he needs more attention today. We were told that the brain lesions , 2 of them, were too small to treat. He is trying myo facial therapy this afternoon. I will also call his oncologist and palliative nurse. He definitely needs more pain relief before anymore diagnostic exams.

Last night my husband started a long acting pain med and then he has immediate release for breakthrough pain. His headache pain level has decreased to a 3 instead of a 10. We are relieved. Next week he is due for f/u chest, neck CT scans. He hasn't had to take such strong meds since his original diagnosis three years ago so increasing pain meds was hard for him to accept. We have been so blessed as he has only had to cope with fatigue and minimal pain as a side effect during chemo and or radiation treatments. I have read that sometimes it is important to accept some level of pain, not always total pain relief. If the headaches persist more testing on his brain will be pursued. We are so grateful for everyone's suggestions and empathy. Our fifteen year old daughter said ," Mom , dad is so lucky you are a nurse and his advocate, what do people do that don't have that option?" I told her hopefully like me they have found websites like Cancergrace.org and Inspire.com. These websites are so helpful and again Mahalo for your professional thoughts and individual experiences. Everyone contributes to make the cancer journey more tolerable. Three years ago my husband was told he might only see 8 months and we have had three good years with minimal complications. For that we are grateful but still pushing ahead for more and living life daily.

Many new changes and discoveries since I posted two weeks ago. We eventually switched from OxyContin to MSContin as George seems to do better with this med which we had only needed 3 years ago. Headaches are better but consistent.
He has had MRI, CT chest, head neck, total body bone scan.
CT chest : medial left lower lobe mass 6.1 by 5 cm. an increase in 1 cm.
The first MRI done in March showed a 2 mm lesion in the mid pons
MRI April 11 now shows 6mm lesion in clivus bone and sphenoid sinusitis
Total body bone scan: Will get results tomorrow

Our oncologist planned to start taxotere this coming week but since we saw the radiology oncologist on Friday with new MRI results we most likely have to do radiation therapy to the clivus lesion promptly. Thankful that our drs had continued to test and diagnose as they were concerned with the sx of headaches, dizziness and nausea. Antibiotic has been started since sinusitis can also cause excruciating pain. So as we prayed not to have diagnosis of leptomeningeal carcinoma , now we have rare clivus tumor. He is also starting steroids again.

We know how serious this tumor is, location, risky treatment. Any experience or suggestions as to where we go from here. Success with radiation? Will his treatment of radiation create more problems? We believe the lung tumor treatment will be postponed as the clivus tumor will be the priority. Hoping to give George more time but fearful of destroying quality of life.....We pray and are so appreciative of any advice or suggestions with experience with his current clivus tumor.
mahalo,
Connie

My husband has completed radiation, 22 tx to the clivus bone. The headaches are almost gone. But within the last few days he has developed right foot, toe, leg and hip pain. The pain is so intense he can only walk 20 ft with a cane and then must sit down. So now pain meds increased, bone scan and MRI today. We also are to begin Taxotere chemotherapy for his increasing in size lung tumor. Encouraged to see relief from the headaches, frustrated that he may most likely have to start radiation again short term for the right leg area and he is anxious to start chemo. All other organs so far are cancer free. Pain and fatigue have always been our only obstacles. I know if oral meds stop working we may soon have to try transdermal patch or even intravenous meds. But if we get pain in control and can resume chemo / radiation there is always hope. I am wondering if anyone has any information on immunotherapy for stage 4 NSCLC adenocarcinoma with bone mets. George has had such an incredible 3 years with good results and for that we are so blessed. We are at a critical point in his disease. Hoping I am helping him make good decisions with his tx. Any thoughts on immunotherapy ?
Thank you
Connie

NSCLC was stage 4, grade 2, +ck7,+TTF-1, -ck20, -cdx2, kras + G12D in codon 12, EGFR - these are the original results from George's biopsy.

Think wild card, alk - but I need to review our path reports again, its been three years since the biopsy was done March 2010.