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Stepdad recently diganosed with stage IV


photokakar

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I am new to posting on the board, but have been reading the inspiring stories and advice for the past month now. My 55 year old stepdad, who my kids, husband and I are extremely close with, was diagnosed with stage IV NSC Lung Cancer on Sept 6th. His started out with bad back pain and he limped around for at least a month thinking it was a pulled muscle. The docs had given him steroids and more also thinking he had pulled a muscle since he is such an active guy. When the pain in his back and leg wasnt going away, they decided to do an MRI and discovered a tumor on his lung. Apparently the tumor spread to a spot near or on his spine, which was causing all the back and leg pain. He was admitted to the hopital for pain and to determine his treatment plan. After all the test were run (and I dont remember all the test they did and do...) they found the there was no cancer in any other organ, or blood or bones or lymph nodes. The lung tumor had spread to the spine through blood, although the cancer isn't in his blood. There was talk of surgery to remove the tumor on the spine, but because it was a risky surgery, they opted to do the radiation and chemo instead, hoping the tumor would shrink and the pain in his back would subside. (even though it had eaten some into his bone already). He received 10 rounds of radiation and then was to start chemo right after. He had no real bad side effects to the radiation but the pain was still bad in the back. He started chemo 2 weeks ago and is supposed to go back this Friday for his second treatment. (He is doing chemo 1x every 3 weeks for a 6 hour session. He gets 4 meds in his chemo...)The first week after his chemo he was fine, although the pain was there pretty bad and he did lose his appetite...but never got sick. He did force himself to eat so he won't lost too much weight and he was doing good after a few days except for the severe pain in his back. He and my mom started to worry that the radiation was supposed to maybe shrink the tumor enough to reduce the pain, but nothing was getting better. Last Wednesday, my mom called the doctor when the pain got so bad he couldnt walk to the bathroom. They admitted him in the hospital and he was there until today, where they were managing his pain and re evaluated everything. THey took scans again and saw that nothing had changed yet, and that the tumor on the spine is bothering a nerve and has eaten into a bone which is causing all the pain. They asked about surgery again, thinking that doing chemo for the next 9 weeks or more is going to be hard to get through while in pain. The docs still say the surgery is too risky, espeically now that he has gotten chemo and radiation and if they operate that it may not heal. He and my mom have decided to try to manage the pain and continue chemo, because the docs think that it is working since nothing has spread or grown. He came home today, loaded with diladid for pain mangement and got settled. He is able to walk, although slow because of the pain....he is eating well and even mentioned the leg pain being better today. Then, at dinner time, my mom felt his head and he was burning up. He had a 103 temp and she called the doc. They said to get him to the hospital right away (so he was home for maybe 4 hours) and the ambulance came and got him. He is now at the hospital, getting admitted once again. My mom has had high spirits as has he , but after talking to her tonight, she seems to be slowly getting more and more sad. I dont want either of them to lose hope, but the doc did tell them before chemo started that he had a 1 year worse case scenerio to a 5 year best case scenerio situation and to get all their stuff together. My mom is a wreck tonight after having to send her hubby to the hospital again. I am spending a lot of time with her, as I always did, and so are my kids who are VERY close with them both. My kids are ages 7 and 10 and they brighten her spirits when we are with her. We are keeping them away from my stepdad because of germs and infection.

Does anyone have a story like this? The back pain or spine tumors? The fever after chemo? I just need some inspiring information....it is so hard to keep good thoughts in your head when it seems that all around you hear bad. I keep asking myself if he will ever be the same Steve again?

Thanks for reading my story...I hope that I will have better news soon.

Jenn

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Hi Jenn. I am so sorry to hear about your step dad. I too have spine mets and can attest to how painful those can be. If he has radiation on his spine, it does take awhile for the full effects of that to kick in. The benefits of radiation can go on for months. There are some other procedures that can be done to lessen pain in the spine area (some surgical ones but perhaps you guys have already explored those, one is a cementing procedure to basically stabilize everything). Chemo can be a tough haul as well and good for you guys for being vigilant and monitoring his temp. I hope they can get him under control and comfortable in the hospital, home soon, and feeling well enough to resume chemo. There is always hope in all of this craziness...we just need to somehow survive the darn treatments! I wish your step dad, you and your family the best.

Sandra

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Hi, Jenn, welcome to the group. I can't give you any first-hand advice on the back problems, since I haven't been down that road myself (at least not yet). I see Sandra has responded, and since you've been browsing the site for a few weeks I'm sure you've read many of her helpful posts.

If you haven't already, may I suggest that you visit cancergrace.org (the previous onctalk.com has been folded into GRACE, Global Resource for Advancing Cancer Education). There's a wealth of information there, especially on lung cancer, constantly updated by a Seattle oncologist who is an internationally-recognized expert on lung cancer and who gives high priority to promptly answering questions from people like you and me. In addition to Dr. West, there is a radiation oncologist on faculty (Dr. Goldberg) who frequently responds to posts. Although they can't give specific medical advice to someone who isn't their patient, they present the various pros and cons and considerations of a situation in a way that can be very helpful. A number of us are "dual citizens" and have the same usernames there as here.

Best wishes and Aloha,

Ned

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Hi, Jenn,

I'm so sorry that you and your family are having to deal with this. I, too, was diagnosed with stage IV NSCLC as a result of back pain. I have lesions in my thoracic and cervical spines. I have not had the severe pain your stepfather is having and I am very sorry that he is having such a tough time with that. I second Ned's recommendation that you check out cancergrace.org, but everything you have described sounds appropriate to me. What's called febrile neutropenia (fever when the chemotherapy has knocked out the white blood cells that fight bacterial infections) is the biggest risk of chemotherapy and they may give your stepfather some white blood cell boosters (Neulasta or Neupogen) after his next chemotherapy treatments.

Sandra is right, surviving treatments is sometimes the biggest challenge of this whole deal. After radiation no one is going to want to think about surgery for quite a while because of the poor healing. Radiation is a great treatment for pain related to spinal lesions and I would expect him to get pain relief as the tumor responds to the radiation but there is also the inflammation that comes in response to the radiation injury so sometimes there's a wait involved.

Good thoughts to all of you as you walk this road.

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Hello Jenn and welcome to LCSC

I am sorry about your step dad but so glad you found this site.

I am glad that you've been reading and getting to know the board and our members here. I am sure by now you are aware that this is a wonderful site for information, advice and support.

Please keep posting and let us know how your step dad is doing and know we are here to help you however we can

Warmly,

Christine

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Hi Jenn,

I was also diagnosed after severe back pain brought me to the ER. A little over a year ago my back pain was so bad I could not manage to walk from my bedroom to the family room, I went to my first chemo in a wheelchair. After 1 chemo it was somewhat better, and after 2 it was significantly better. Now my back is just a minor issue. I wish your step dad well through this difficult journey, there is hope that his pain will get better with chemo alone.

Anne

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Jenn,

Welcome! I have faced bone mets in the past couple of years, fortunately for me, they weren't as debilitating and painful as you describe. I have my fingers crossed that better days are ahead and the radiation to start working its miracle asap!

Wendy

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Jenn,

I, too, have NCLC stage IV, diagnosed April '07.

I don't have any expereince with spine mets or raidation but I did have a fever after my first chemo -- paraplatin/alimta/avastin.

I also had extremely high liver enzymes and blood pressure so low that my doc said it was a wonder I wasn't fainting all over the place!

I was hospitalized for 5 days until everything stabelized. They never did find a cause. They think it may have been some underlying infection, possibly from recent lower lobe resection and had me on IV antibiotics but all cultures came back negative.

Anyway, this was at the beginning of June. I've been on chemo since with no problem, so who knows.

Good luck,

Linda

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