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Adrenal Cancer.

Posted by 1kjewels @1kjewels, Nov 6, 2018

I was diagnosed with Stage 3 Adrenocortical Carcinoma in Feb 2018. March 29 had surgery to remove massive tumor on adrenal glad. Also removed one kidney, spleen, 1/2 pancreas and portion of colon. Had 6 wks of radiation, however next scan showed new growth on both lungs and am currently on Mitotane. Next scan showed growth of spots, but nothing else new. Increased dosage of Mitotane and waiting for next scan in 4 weeks. I am looking for anyone who may has experienced this and found alternative treatment with success. This is a very rare cancer, 1 in 1.7 million odds.

Interested in more discussions like this? Go to the Cancer group.

Lisa Lucier | @lisalucier | Jul 13, 2019
In reply to @alanbruce "Has anyone out there had proton radiotherapy for their Adrenal Cancer if so what was their..." + (show)
@alanbruce

Has anyone out there had proton radiotherapy for their Adrenal Cancer if so what was their experiences and where did they have the treatments.

Jump to this post

Hi, @alanbruce – I've moved your post about doing research related to your daughter's stage 4 adrenal cancer to this existing discussion on the same topic so you can connect with others who have talked about this cancer. Hoping that members like @1kjewels @annadamscleary @caradivs @lesliestump @anderson2742 will offer their thoughts about proton beam therapy and where they had it, if applies.

For reference, here is further information on proton beam therapy and specifically Mayo Clinic's use of this treatment https://www.mayoclinic.org/departments-centers/proton-beam-therapy-program/sections/overview/ovc-20185491.

Is your daughter deciding whether or not to pursue this therapy option at this point, alanbruce? What symptoms has she been experiencing?

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2 replies
Heartbroken | @amd123 | Jul 13, 2019
In reply to @alanbruce "Has anyone out there had proton radiotherapy for their Adrenal Cancer if so what was their..." + (show)
@alanbruce

Has anyone out there had proton radiotherapy for their Adrenal Cancer if so what was their experiences and where did they have the treatments.

Jump to this post

My son had proton therapy at University of Florida Proton for synovial sarcoma.

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1kjewels | @1kjewels | Jul 13, 2019
In reply to @anderson2742 "I did try 4 different types (combinations) of Chemo, prior to the keytruda. To early to..." + (show)
@anderson2742

I did try 4 different types (combinations) of Chemo, prior to the keytruda. To early to tell on keytruda. Last scan was inconclusive. Will work on another 5 rounds. Side effects are not pleasant. Not very common but I am having server joint pain. Especially in my shoulders. I will keep you posted. I hope the chemo will help get some control over this for you. I have just entered year 4 of this battle. I really struggle with stopping treatment. Whenever I have been in between treatments (usually no more than a week) I have always felt great.

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I was just re-reading some of these posts. I was wondering how the Keytruda treatments have been working out? Just finished 6 rounds of chemo myself and am scheduled to start a pill soon. The chemo did shrink and take care of a lot, but not all.

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1kjewels | @1kjewels | Jul 16, 2019
In reply to @alanbruce "Has anyone out there had proton radiotherapy for their Adrenal Cancer if so what was their..." + (show)
@alanbruce

Has anyone out there had proton radiotherapy for their Adrenal Cancer if so what was their experiences and where did they have the treatments.

Jump to this post

Hi Alan! I had six weeks of Proton therapy following surgery in my abdomen area. This process went very well for me, however, after it was finished a scan showed new growth in my lungs. I then started Mitotane for a time. After two scans showing continued growth, I got a second opinion. I then started a rigorous course of chemo for 6 mo. I have had good luck with this as some spots disappeared and some had shrunk considerably. Now that I’m done with that I will be starting a chemo pill called Levatinib. The hope is that this will hold what’s left at bay.

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1 reply
1kjewels | @1kjewels | Jul 16, 2019
In reply to @anderson2742 "Sorry for the delay. I have stopped Keytruda. Side effects to painful to deal with. My..." + (show)
@anderson2742

Sorry for the delay. I have stopped Keytruda. Side effects to painful to deal with. My oncologist suggested Y90 treatment to at least get control over the larger tumors on my liver. Very interesting treatment. There are some great videos out there explaining the procedure. My first treatment was on April 16 to the left lobe of liver. I need to wait 4 weeks before treating the rest. Next appointment is May 24th. Then a scan at the end of June. As most know with this rare cancer, at this point we are only trying to get some control. The only noticeable side effect is extreme tiredness for about 1-1/2 weeks. Spirits are high and faith in my Heavenly Father has never been greater. I like when he controls everything and I just sit back and enjoy life the best I can. May God bless everyone as He has blessed me. Aaron

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@anderson2742
Hope all is well. How has the Y90 been working?

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alan bruce | @alanbruce | Jul 16, 2019
In reply to @lisalucier "Hi, @alanbruce - I've moved your post about doing research related to your daughter's stage 4..." + (show)
@lisalucier

Hi, @alanbruce – I've moved your post about doing research related to your daughter's stage 4 adrenal cancer to this existing discussion on the same topic so you can connect with others who have talked about this cancer. Hoping that members like @1kjewels @annadamscleary @caradivs @lesliestump @anderson2742 will offer their thoughts about proton beam therapy and where they had it, if applies.

For reference, here is further information on proton beam therapy and specifically Mayo Clinic's use of this treatment https://www.mayoclinic.org/departments-centers/proton-beam-therapy-program/sections/overview/ovc-20185491.

Is your daughter deciding whether or not to pursue this therapy option at this point, alanbruce? What symptoms has she been experiencing?

Jump to this post

yesterday was her first day with Radiology taking about their plan of action for her. Once I am updated I may be helpful here. Thanks for the links

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alan bruce | @alanbruce | Jul 16, 2019
In reply to @1kjewels "Hi Alan! I had six weeks of Proton therapy following surgery in my abdomen area. This..." + (show)
@1kjewels

Hi Alan! I had six weeks of Proton therapy following surgery in my abdomen area. This process went very well for me, however, after it was finished a scan showed new growth in my lungs. I then started Mitotane for a time. After two scans showing continued growth, I got a second opinion. I then started a rigorous course of chemo for 6 mo. I have had good luck with this as some spots disappeared and some had shrunk considerably. Now that I’m done with that I will be starting a chemo pill called Levatinib. The hope is that this will hold what’s left at bay.

Jump to this post

Thank you so much for the update. I hope all goes well for you.

REPLY
annadamscleary | @annadamscleary | Jul 19, 2019
In reply to @1kjewels "Is there anyone else out there that has Adrenal Cancer?" + (show)
@1kjewels

Is there anyone else out there that has Adrenal Cancer?

Jump to this post

I had surgery for adrenal corticoid cancer at Mayo Clinic in Rochester in June 2018. I chose to not take any mitotane or further treatment since I am 81. Scans since then have remained clear. Am now with Dr. Habra at M.D. Anderson in Houston.

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alan bruce | @alanbruce | Jul 19, 2019

Thank you for your update. Glad you are doing well

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alan bruce | @alanbruce | Aug 22, 2019
In reply to @lisalucier "Hi, @alanbruce - I've moved your post about doing research related to your daughter's stage 4..." + (show)
@lisalucier

Hi, @alanbruce – I've moved your post about doing research related to your daughter's stage 4 adrenal cancer to this existing discussion on the same topic so you can connect with others who have talked about this cancer. Hoping that members like @1kjewels @annadamscleary @caradivs @lesliestump @anderson2742 will offer their thoughts about proton beam therapy and where they had it, if applies.

For reference, here is further information on proton beam therapy and specifically Mayo Clinic's use of this treatment https://www.mayoclinic.org/departments-centers/proton-beam-therapy-program/sections/overview/ovc-20185491.

Is your daughter deciding whether or not to pursue this therapy option at this point, alanbruce? What symptoms has she been experiencing?

Jump to this post

She had 5 radiation sessions and now on immunotherapy and then now on immunotherapy. Recent elevated liver numbers

REPLY
alan bruce | @alanbruce | Aug 25, 2019

Can nivipi and ipilimumab combination therapy for adrenal cancer cause elevated enzymes

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1 reply
Ethan McConkey, Moderator | @ethanmcconkey | Aug 25, 2019

Hi @alanbruce you may have noticed I moved your post to this discussion on adrenal cancer that you have taken part in so that you can have all your posts on this topic in one place. Simply click VIEW & REPLY in your email notification to find your post.

What has your doctor said about the elevated enzymes?

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