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  3. HI Joe, Here's my experience with a second opinion , Before I had my lung cancer I had an unrelated primary cancer that was stage 3 and aggressive. I belong to an HMO that has its own hospital and doctors. I had some concerns about the course of treatment that my medical oncologist proposed. I had a rare type of cancer for which there were no published studies. I wemt for a second opinion from a doctor at our local teaching hospital who had clinical experience with my type of cancer. I had to pay for it myself because the HMO wouldn't pay for an opinion from an out of plan doctor. I went back to my HMO doc and told her I wanted the treatment recommended by the second doc and she agreed to do it.Partly, i think, because the second doc was very well respected in our field and partly because she thought my prognoss was "dismal" anyway and so why not? I'm really glad I got the second opinion and that my in-plan doc was open minded. I'vr been NED on that cancer now for 8 years.
  4. Keep at it Ron- we’re rooting for you!
  5. My thoughts exactly Curt.
  6. JSEIB, Welcome. Unfortunately, I also suffer chronic foot pains. In my case, the cause is the drug Taxol and I had 18 infusions of the stuff. Doctors call my symptom a peripheral neuropathy but most lung cancer survivors call it “Taxol Toes”. My foot pain is chronic at about a level 4 out of 10. My toes burn, the joints in my toes hurt, and the edge of my heal hurts. I’ve tried Gabapentin and Lyrica and these didn’t help at all. The anesthesiologists (pain management physician) I consult with told me injected nerve blocks will work, but the medication doesn’t last too long and the body gets accustomed to the medication. Moreover, there is a mandatory minimum period between injections. I was told that the block works but after feeling no pain, resumption of pain as the medication wears off is very hard to deal with. So I’ve avoided pain blocks. Here is what I do to deal with my pain. Protect the Toes Buy 1/2 to 1 size larger shoe than your normal foot size and buy a wide size. I use Samual Hubbard shoes. They are expensive but worth it. Wear thick woolen socks. Wool is the best cushioning material there is. If you can’t tolerate 100% wool, then buy a wool blend but ensure the wool content is higher than 50%. Buy leather moccasins generously lined with wool. Buy them without a sole and wear them to bed to keep the covers from pressing down on your toes. These are bed shoes only and buy then oversized like your shoes. Treat the Pain My pain resolution strategy is to tolerate the pain through the day and address it at night so I can sleep. Get a script for Lidocaine Ointment USR, 5% and apply it liberally to your toes and other painful areas of your feet. This will only last about 30 minutes but sometimes that is enough to allow me to sleep. Buy flexible freeze packs with gel ace bandage these to your feet. I use this technique when my chronic pain level increases. It is uncomfortable for the first 10 minutes but then the cold produces a numbing effect that eliminates my pain. Fifteen to 20 minutes of icing produces numbness for about 30 minutes, again just enough for me to sleep, sometimes. Only get in bed when tired. Try and keep a regular sleep schedule. Minimize stress and anxiety because these spike my chronic pain. My doc prescribed Xanax and I take 0.5mg at bedtime if I’ve had a stressful day. But, one can grow dependent on Xanax so only use as needed. Sometimes I have bouts of muscle cramps that spike my chest chronic pain from 3 thoracic surgeries. When this occurs, my Taxol Toes feel much worse. Then I need narcotic medication. I have a script for Tramadol that I use about three times a month. I’m very reluctant to use it because of a fear of dependence and the undesirable side effect of constipation. No non prescription medication address my pain because it’s cause is damaged nerves. Even narcotic medication does not reduce the pain; it just makes it easier to tolerate. Standing and Walking Despite orthotic-like shoes, standing and walking long distance spikes my chronic foot pain. So, try and avoid these activities but sometimes distance walking is necessary (like when on a touring vacation). I find I can walk about a mile without spiking my pain and if I rest, I can walk further. Try and find your own limits. One thing that was hard for me was finding the patience to learn pain tolerance. If I give in to trying treatment during the day, I won’t be able to enjoy daytime activities. So, I’ve learned tolerance. I hope these ideas help you. Stay the course. Tom
  7. Curt

    Here we go again.

    Smaller is good Ron! Keep it going.
  8. Katie, I want to thank you for beginning this forum. It has been a lifesaver for me. Every other forum I found, when I was diagnosed, was so negative that I almost stopped looking for one. All the folks on here are so positive about things that I finally started looking at the whole situation a lot differently. My thanks to you and the other good folks on this forum. Ron
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  10. My second round of chemo included Keytruda and it bombed out. The tumor grew from 1.9 x 1.3 to 3.6 x 2.6. I pushed my oncologist to do a biopsy a little, but it wasn’t hard to talk her into it. We both wanted to know for sure what we were dealing with. Needless to say, my Doc started me on my third round of chemo. After 4 rounds of treatments she did a CAT and a PET scan two days ago and I got the results today. Finally, we have things going in the right direction. The report showed it has shrunk by .3 so it is now 3.3 x 2.6. We will do two more treatments and then she said she would give me a break from the chemo for awhile. How long do the breaks usually last? I forgot to ask my Doc. Ron
  11. You Katie Brown are one amazing human being!!! How I wish there had been someone like you around in 1991 when my father was diagnosed with and died 5 months later of lung cancer. You have truly made a difference. I now am going through this a second time only this time it’s my Mom. The difference in the information and support now is astounding. Thank you from the bottom of my (breaking) heart.
  12. 15000+ posts...congratulations!! Make sure to treat yourself! You deserve it! Thank you for all you do for us!
  13. Hey Irene- Wer’re hear for you when you’re able to update us. Hope the procedure went well today. Michelle
  14. Wow Katie!!! Bless you for everything you have done and will continue to do.
  15. I am so very sorry to hear about the pain your are having because of neuropathy. I am hoping there is something that will help you soon.
  16. Looking forward to meeting with the new doc and get everything straightened out. Thanks.
  17. The post diagnostic worry and haze is tough. Try to enjoy life now. Save the worry for scan time. I haven’t figured out how not to worry when those come around.
  18. Hello Barb. I was Stage 3B. The tumor was in the apex of my right upper lobe. Pressing on nerves going down my arm, and onto my chest wall I had chemo and radiation, it shrunk. I then and had my right upper lobe removed and more chemo after as was planned. That was finished in 1998 and I am still here. Best wishes , keep us posted. Donna G
  19. Hi Barb, Like Paula, I was also diagnosed 3B because not only the tumor had spread to lymph nodes but also to all over right lung. I was told by everyone - my med onc, thoracic surgeon, and then later radiation onc (I had post surgery radiation treatments) - that the surgery wouldn't have been an option if I wasn't so "young and healthy". So I'm thinking how healthy you are does count into their recommendation of whether or not present a surgery as an option for you. I'd recommend a consultation with a kick *ss 😀 thoracic surgeon - good luck to you... MB
  20. Due to all my cancer treatments for metastatic kidney cancer, luckily, most of my tumors are now gone. I still have to stay on my targeted therapy cancer treatment (Votrient) for now. My question is, now that I am left dealing with painful neuropathy in my feet from all the cancer treatments, are there any patients out there dealing with this kind of pain? If so, have you found any medication, supplement(s), or therapy that help to calm down the foot pain? Currently I take Gabapentin, but it's not helping at all.
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  22. Hello to my TKI peeps- Now that the nice weather is here (sort of), thought I would pass along my latest accidental discovery. There’s a bunch of potassium in watermelon and it seems to help with the edema. Onward. Michelle
  23. Hi there Banna- Just wanted to drop in and say hello. It’s perfectly okay to feel like a basket case right now. None of us ever expected to join this club. In time you’re confidence will increase. I know that’s hard to imagine at this point however there are better days ahead. I’m the meanwhile, do what you can, laugh, sing, live. Michelle
  24. Thank you Tom. I was just such a shock and panic set in. I really need to focus on the positive
  25. Curt, thank you soooo much for this! I am a basket case.
  26. Good, let’s get the ball rolling... prayers for you!
  27. Hi Jo- You’re doing a great job! There are big guns on the team at UCSF. You may want to check out the Lung Cancer Living Room on YouTube ( Formerly the Bonnie J Addario Foundation now Go2Foundation). You might consider attending in person. It’s a wonderful organization where you will feel supported and inspired. Have faith that you are doing all that you can. Michelle
  28. Hi Jo. I’m sorry to hear about your husbands diagnosis. My father had Stage IV lung cancer and I was recently diagnosed at Stage 1. My dad liked fruit smoothies (we’d hide veggies and protein powder in them) while he was undergoing treatments. Milk shakes also. I hope his symptoms improve and you get some of of those bright days you are hoping for soon.
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