Latest update from IV-ville
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B, I don't think ANY of us
B, I don't think ANY of us think you are being melodramatic. I can't imagine your pain, and I am so sorry you having to go through it. It sounds like you find a surgeon who has an idea - thank god for that. All my thoughts and prayers my friend. We are here for you any time. E
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Similarities Again
Again, there are similarities between our cases. I've had sciatica since I was 34, so I can identify with how you usually feel. A couple of years ago, I had numbness develop in the front of my thigh. I was referred to a neurologist for testing by my PCP. I thought I still had peripheral neuropathy, but the tests came out negative for that. I'd had it in both feet. I still had some numbness in one foot, but that was apparently a result of having nerves cut during bunion surgery. The nerve studies didn't show any problems causing the thigh numbness. The neurologist said my problem must be that I was wearing my clothes too tight. He said a condition called paresthetica meralgia results from that. I realized that I had tightened a belt a little more tightly recently, so I thought that was the cause. He said it would go away in 6 months, which it didn't do.
Eventually, I had a hemoccult test given to me by my PCP. You may remember my story. Blood was found in one of the 3 smears I did from my stools, which led to a colonoscopy where cancer was found (by the camera views) growing on the outside of my ascending colon. It was also in the peritoneum and paracolic gutter, plus it was in my muscle and just about to go into my bone. I had a CT scan and a PET scan, then surgery the following week. My GYN/onc. and a general surgeon operated on me trying to remove as much cancer as possible, but they were not able to get it all out of the muscle because it would've left me unable to walk. They figured chemo would take care of what was left of it, and I was NED after chemo. However, I'm still numb and my CA-125 isn't as low as it was after my first surgery, so I'm still a little leery. My GYN/onc hinted that he thought my UPSC would come back again in about 5 years. I don't think mine was as bad as yours, although you now have me wondering if some of my sciatica was caused by this thing. I was never told which nerve was the problem, but the neurologist said the nerve ran over the top of my hip, which may fit with the sciatic nerve. I got epidural steroid shots in Dec., 2016 and Jan., 2017 which seemed to help. My cancer came back in a big rush shortly thereafter. in two months, my CA-125 went up well over 800%. My surgery was in early April last year.
I sympathize with how you're feeling. Regular sciatica is bad enough without having something pressing on the nerve continuously. I hope they can get most or all of it out with your surgery. Keep posting so we know what's happening. Good luck.
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Oh B! I hate to hear this
Oh B! I hate to hear this from you....you have been one of the most supportive and encouraging women here. So.....you definitely shouldn't feel bad when it's you that needs to be supported. I hope you feel better really soon. I'm so sorry you're in such pain. Boy would I like to have just 5 minutes with that rotten doctor!
I think there's a lot of truth in what Takingcontrol58 was talking about. I've been reading a book with similar information entitled, Life Over Cancer by Keith L. Block M.D. It devotes a whole section to the significance of elevated levels of iron, and it describes the importance of many more things. Some people call the author "The Father of Integrative Oncology". He is not against conventional medicine, yet he believes there is more that we can do, in addition, that can make our bodies an inhospitable environment for recurrence. My doctor actually recommend the book.
I hope your surgery goes well and the recovery is quick! Please keep us posted.
Sincerely,
Stacey
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Dear friends, thank you forMrsBerry said:I have been thinking of you,
I have been thinking of you, also. I hope you getting some relief.
Dear friends, thank you for reaching out to me. I missed all of you while I was away. This is what happened: I'd been having increasing pain from a huge, rapidly-growing pelvic tumor and was scheduled for radiaton starting June 11. I went for my first out-patient treatment but wound up being directly admitted to the hospital due to uncontrolled pain. The week after that was a blur of various drugs but I did manage to complete 4 radiations while in the hospital, courtesy of a morphine drip and staff who were kind enough to ignore my screams. To add insult to injury, my computer got a virus and locked me out the day before I was hospitalized, so I had no means of communication. Caramba! Fortunately a young cousin was able to unlock it today so I can get back into all my accounts. Mirable dictu!
I got home Saturday evening and am now doing daily radiation courtesy of fentanyl patches and continuous morphine shots. I think there must be at least some shrinkage happening, since the pain isn't as bad. On Friday I'll have my second Keytruda infusion, too, so hopefully that's doing it's part as well. The CT scan week after next will tell more. Meanwhile you are my shining stars; thank you again for reaching out. You mean the world to me. B
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Good to hear from you
I’m glad they’re finally controlling the pain. Fingers crossed that the therapy will eradicate the source of it. Stay strong warrior! We’ve got your back!
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Hooray for pain relief!
der Maus, Bobbi, your newsy update suggests you are getting the pain relief you should have. I, too, benefited from morphine and fentanyl. I am hopeful on your behalf that the CT will show the tumor is shrinking. I forget now how much time passed between my own hospital stay for uncontrolled pain and when I started to wean off the fentanyl after radiation started but I am sure you have someone watching over your care to responsibly balance pain relief and the prospect of unhealthy dependence on the opioids. Given the national dialog on opioid addiction and what seems to me some knee-jerk reaction of shutting down prescriptions, it is a relief to hear that palliation physicians did what was responsible and necessary, i.e., use effective doses of opioids, to relieve your pain. Cancer patients' needs should be respected. Enough editorializing!. Continue to heal and recover your strength and mental stamina to move on to the next step in extending your years among us. You are a vital contributor here and in your community, I am sure. Best wishes, Oldbeauty
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Wow.derMaus said:Dear friends, thank you for
Dear friends, thank you for reaching out to me. I missed all of you while I was away. This is what happened: I'd been having increasing pain from a huge, rapidly-growing pelvic tumor and was scheduled for radiaton starting June 11. I went for my first out-patient treatment but wound up being directly admitted to the hospital due to uncontrolled pain. The week after that was a blur of various drugs but I did manage to complete 4 radiations while in the hospital, courtesy of a morphine drip and staff who were kind enough to ignore my screams. To add insult to injury, my computer got a virus and locked me out the day before I was hospitalized, so I had no means of communication. Caramba! Fortunately a young cousin was able to unlock it today so I can get back into all my accounts. Mirable dictu!
I got home Saturday evening and am now doing daily radiation courtesy of fentanyl patches and continuous morphine shots. I think there must be at least some shrinkage happening, since the pain isn't as bad. On Friday I'll have my second Keytruda infusion, too, so hopefully that's doing it's part as well. The CT scan week after next will tell more. Meanwhile you are my shining stars; thank you again for reaching out. You mean the world to me. B
More adventures in courage and grit. So proud of you for getting through it and still having the energy to share the details with us! So eager to hear what you think of Keytruda as far as side effects, and what the CT says. Thankful we have so many options. (PS I have a IV friend who had tumors growing after chemo and radiation, and after only 3 months of Keytruda there is NOTHING on the scan. What hope this gives us!!)
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Thinking of You!
I just wanted to let you know that I'm thinking of you and praying for you. I hope your pain remains controlled, and I am excited to hear positive results from the Keytruda and radiation. I'm in awe of your strength and Warrior Spirit! I really needed to be inspired today, so I thank you.
Sincerely,
Stacey
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B, I am sending you virtual
B, I am sending you virtual hugs. Love, E
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WOW
If anyone here is a shining star here, it's you! I can't believe how much you've been enduring and sure hope that you are finally going to get the beast tamed, but boy oh boy what you are having to endure to get there! Thanks for the update, we've been so worried about you!
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One day at a time. Cam’t
One day at a time. Cam’t believe how much you have been through Warrior Lady!
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How did the Keytruda go today
How did the Keytruda go today? Is the pain subsiding anymore?? You have been through hell and back with this, Bobbi, and I wish there was something I could do to help.
Ibi sed eamus ad gratiam dei I.
Love,Eldri
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