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.

@colleenyoung Hi Colleen! I actually started taking it after surgery and radiation. After two scans showing the metastasized spots on my lungs growing a little, I got a second opinion at the Rochester campus. We reviewed all the options and decided to be aggressive and try chemo. It’s still only 30-50% chance of working, but I thought I needed to pull out all the stops and try.

It’s scary and now that it’s only a couple of says away, I am really nervous and hoping I made the right choice!

Anyone else facing this dilemma?

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Hi all. I hope this works. Thank you Colleen for getting me in touch with this group. I was diagnosed with renal cancer Jan 24, 2016. It wasn't until surgery Feb 17, 2016 that I found out that I actually had ACC. Yes very rare. Post surgery had radiation and then onto Mitotane. I semi-tolerated the Mitotane but quit after several scans that continued to show growth. I currently have tumors in liver, lungs and lymph nodes. I am on a immunotherapy drug called Keytruda. All we are trying to do now is get some control. We are currently trying to get my insurance to pay for Y-90 Treatment on the tumors in my liver. Luckily I have a great support team in my family and friends. Aaron

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@anderson2742 Hi Aaron! Thanks for sharing! Also was in Mitotane. While I tolerated it well, it didn’t seem to stop growth for me either. I got a second opinion from the Rochester campus and the doctor I saw had had some success with chemo. I decided to stop Mitotane and try this. Starting Round 3 today with a scan in about 4 weeks. Praying this shows some success!

Mine has spread to lungs and now liver as well. Have you had luck with the keytruda or is it too soon to tell at this point?

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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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@anderson2742 Hi Aaron! Let’s keep in touch!! I’m very interested in your treatment!! Praying that it’s successful for you and could possibly be a road for many of us searching for the answer as well! Julie

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Will do.

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@1kjewels

@anderson2742 Hi Aaron! Let’s keep in touch!! I’m very interested in your treatment!! Praying that it’s successful for you and could possibly be a road for many of us searching for the answer as well! Julie

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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

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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Here is a link on Y90. https://www.youtube.com/watch?v=YndyQkSZl5I

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

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@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.

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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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@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.

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

Liked by Lisa Lucier

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@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.

Liked by Lisa Lucier

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@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.

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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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@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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@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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