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- This topic has 33 replies, 10 voices, and was last updated 9 years, 2 months ago by
AshleyS.
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- February 18, 2016 at 7:56 pm
Hello everyone! It's been awhile since I've visited as I need a break. After Artie passed and I recurred again, things hit me hard…this disease just sucks. I see people are doing well while others are having challenges. I've thought about many of you who've I communicated with in this forum; praying you're doing well. For those who are new and I haven't made your acquaintance…welcome you're in a good place with good people. I did a bit of poking around and saw many familiar names which is great! Special call out to Celeste(Bubbles) who has been a beacon of light and wealth of information!!! I saw a MRF publication in oncologist office with you on the cover and your story!!! Awesome!!!
Not sure where I left off when I took my break but after 4th recurrence (sub q to left arm pit), I didn't have to do the surgery for margins, my surgical onc at Northwestern said not necessary so I started the Nivo in November as adjuvant treatment being NED and believe I'll have my 8th dose next week. Overall, feeling fine with minor side effects; itchy skin (rash) and need to increase synthroid meds. I've had a few things removed…currently waiting on pathology for small bump removed from neck/collarbone area. A little freaked about this one…haven't had the best luck in past. Of course as we all know the waiting and anxiety is overwhelming. Keep asking myself if this is mel….then the Nivo is not working??? Hopefully they have more in the pipeline.
Wishing everyone the best! Keep on fighting!!!
Josh
- Replies
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- February 18, 2016 at 9:10 pm
Hi Josh- Nice to see you posting….
I am keeping my fingers crossed that the path report from this latest "bump" comes back as something other than MEL.
Hoping your upcoming NIVO treatments keep you NED with only minimal side effects…
Will be looking for your next post and hoping for good news!
Best,
jenny
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- February 18, 2016 at 9:10 pm
Hi Josh- Nice to see you posting….
I am keeping my fingers crossed that the path report from this latest "bump" comes back as something other than MEL.
Hoping your upcoming NIVO treatments keep you NED with only minimal side effects…
Will be looking for your next post and hoping for good news!
Best,
jenny
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- February 18, 2016 at 9:10 pm
Hi Josh- Nice to see you posting….
I am keeping my fingers crossed that the path report from this latest "bump" comes back as something other than MEL.
Hoping your upcoming NIVO treatments keep you NED with only minimal side effects…
Will be looking for your next post and hoping for good news!
Best,
jenny
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- February 19, 2016 at 2:33 am
Hey Josh! I'm happy to see your update and that you are doing well! I know this has been a bumpy road for you, but your resilience and honest feelings about this stuff is spot on. Ive done over twenty infusions of nivo so far, tomorrow's scan will tell if I get to keep my NED status! Praying for you!
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- February 19, 2016 at 2:33 am
Hey Josh! I'm happy to see your update and that you are doing well! I know this has been a bumpy road for you, but your resilience and honest feelings about this stuff is spot on. Ive done over twenty infusions of nivo so far, tomorrow's scan will tell if I get to keep my NED status! Praying for you!
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- February 19, 2016 at 2:33 am
Hey Josh! I'm happy to see your update and that you are doing well! I know this has been a bumpy road for you, but your resilience and honest feelings about this stuff is spot on. Ive done over twenty infusions of nivo so far, tomorrow's scan will tell if I get to keep my NED status! Praying for you!
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- February 19, 2016 at 5:24 am
Its great to hear you are doing well on the nivo Josh. I hope you get your path reports back quickly.
Wishing the best for you – Paul
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- February 21, 2016 at 2:29 pm
Thanks for the update Josh. I am with you. I really struggled with Artie's goodbye. I haven't posted much. I am always happy and very grateful to see NED anywhere on here! Hoping path comes back good, if not you just get after this crap fast! You are starting from a good place.
Jake, now 18, has scans 3/7. I hate the whole process! He has been on keytruda 9 mo now. Some shrunk. Some grew. For now he just lives best he can!!
I am glad you wrote. Let us know how it goes–either way. You have some pretty amazing peeps on here!!
Prayers,
kerri–momofjake
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- February 21, 2016 at 2:29 pm
Thanks for the update Josh. I am with you. I really struggled with Artie's goodbye. I haven't posted much. I am always happy and very grateful to see NED anywhere on here! Hoping path comes back good, if not you just get after this crap fast! You are starting from a good place.
Jake, now 18, has scans 3/7. I hate the whole process! He has been on keytruda 9 mo now. Some shrunk. Some grew. For now he just lives best he can!!
I am glad you wrote. Let us know how it goes–either way. You have some pretty amazing peeps on here!!
Prayers,
kerri–momofjake
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- February 21, 2016 at 5:49 pm
Hi Kerri-
Thanks for response. I've been very fortunate even though I haven't had luck with these tiny bumps removed, maybe this is the time. It's the anxiety now that always gets best of me…the looming question if it is mel…is the Nivo not working??? Just hate it.
I've read your profile and posts in past regarding Jake. I honestly never responded to any as it is too hard. I check the posts with anticipation and hope of hearing the best news. I hate seeing this for anyone let alone a teenage boy. Is there a chance to move to Nivo if needed after scans on 3/7? Any other treatment options? Trials? I'll be prayng for Jake & family.
Josh
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- February 21, 2016 at 5:49 pm
Hi Kerri-
Thanks for response. I've been very fortunate even though I haven't had luck with these tiny bumps removed, maybe this is the time. It's the anxiety now that always gets best of me…the looming question if it is mel…is the Nivo not working??? Just hate it.
I've read your profile and posts in past regarding Jake. I honestly never responded to any as it is too hard. I check the posts with anticipation and hope of hearing the best news. I hate seeing this for anyone let alone a teenage boy. Is there a chance to move to Nivo if needed after scans on 3/7? Any other treatment options? Trials? I'll be prayng for Jake & family.
Josh
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- February 21, 2016 at 5:49 pm
Hi Kerri-
Thanks for response. I've been very fortunate even though I haven't had luck with these tiny bumps removed, maybe this is the time. It's the anxiety now that always gets best of me…the looming question if it is mel…is the Nivo not working??? Just hate it.
I've read your profile and posts in past regarding Jake. I honestly never responded to any as it is too hard. I check the posts with anticipation and hope of hearing the best news. I hate seeing this for anyone let alone a teenage boy. Is there a chance to move to Nivo if needed after scans on 3/7? Any other treatment options? Trials? I'll be prayng for Jake & family.
Josh
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- February 21, 2016 at 2:29 pm
Thanks for the update Josh. I am with you. I really struggled with Artie's goodbye. I haven't posted much. I am always happy and very grateful to see NED anywhere on here! Hoping path comes back good, if not you just get after this crap fast! You are starting from a good place.
Jake, now 18, has scans 3/7. I hate the whole process! He has been on keytruda 9 mo now. Some shrunk. Some grew. For now he just lives best he can!!
I am glad you wrote. Let us know how it goes–either way. You have some pretty amazing peeps on here!!
Prayers,
kerri–momofjake
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- February 21, 2016 at 5:54 pm
Thanks for responses everyone…appreciate it and like hearing from everyone. Guessing I should get some results next week….think path usually takes a week. It's amazing what I missed in just a couple of months… I'll try to give another update in a week or so. As always, appreciate everyone's support!!! Wishing you all the best!
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- February 21, 2016 at 5:54 pm
Thanks for responses everyone…appreciate it and like hearing from everyone. Guessing I should get some results next week….think path usually takes a week. It's amazing what I missed in just a couple of months… I'll try to give another update in a week or so. As always, appreciate everyone's support!!! Wishing you all the best!
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- February 21, 2016 at 5:54 pm
Thanks for responses everyone…appreciate it and like hearing from everyone. Guessing I should get some results next week….think path usually takes a week. It's amazing what I missed in just a couple of months… I'll try to give another update in a week or so. As always, appreciate everyone's support!!! Wishing you all the best!
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