1. < Cancer

Anyone out there with Thymoma/Thymic Carcinoma

Posted by allisonsnow @allisonsnow, Jan 5, 2017

Am just trying to find anyone to have a discussion with that is currently or has had the struggle with either of these cancers.

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

nenners | @nenners | Mar 14, 2019
In reply to @vchen "Nick. I found the trial details on the website. It says the locations are Belgium, Spain..." + (show)
@vchen

Nick. I found the trial details on the website. It says the locations are Belgium, Spain and Switzerland, with no mention of UK? Are you a UK resident and hence receiving treatment there or you have to travel to UK from the US? Do you know if it can be done remotely say in Australia?

Did your oncologist recommend this trial to you? When I asked our oncologist here about target therapy or new drug, he told us there was nothing. I'm amazed to find the trials on the website supplied in the previous discussions. I'm so thrilled people are sharing info in this forum. When my hubby first got sick in 2014, I tried to find info but could not locate any! Thanks everyone for sharing, Val

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Nivolumab in Patients With Type B3 Thymoma and Thymic Carcinoma (NIVOTHYM) (NIVOTHYM

In the uk. I went to the Marsden because nothing was really working. Saw Dr Popat who suggested this phase 2 trial checking for acid / alkaline levels but it is helping me with B3 since 2006

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1 reply
gailkattouf | @gailkattouf | Mar 14, 2019
In reply to @colleenyoung "@gailkattouf, I appreciate the update. Your dad must so appreciate your investigative research into his symptoms..." + (show)
@colleenyoung

@gailkattouf, I appreciate the update. Your dad must so appreciate your investigative research into his symptoms and advocating for his care. You may be interested in connecting with other members about MG here:
> Groups > Autoimmune Diseases > Myasthenia Gravis* https://connect.mayoclinic.org/discussion/hi-everyone-let-me-begin-by-telling-you-some-of-my-story/

Here's a discussion about Keytruda by lung cancer patients on Connect:
> Groups > Lung Cancer > Immunotherapy and chemo; Keytruda side effects https://connect.mayoclinic.org/discussion/immunotherapy-and-chemo/

However, when I searched on Connect for Keytruda and thymic cancer I found @mddelaney64's profile. While Michael hasn't posted any messages on Connect yet, I looked at his website https://thymiccarcinomacenter.com. I know how rare this condition is and he looks like he's gone through a lot of work to put together stories and information. It may be helpful for your investigations. I also hope @mddelaney64 will post his experiences here.

Gail, how did the meeting with the oncologist go last week?

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@colleenyoung thank you for the MG link. I will take a look. My dad is losing hope and he doesn't seem to take a personal interest in knowing about his condition. I think it is too terrifying. His weakness is beyond profound. Prednisone 60 mg PO and IVIG every 3 weeks and he is still getting weaker and more discouraged, so may be it wasn't MG...neurologist said he definitely has severe peripheral and motor neuropathy and thought it could be MG.

He is also thru 2 treatments with Keytruda. We were told that we may not have symptoms at all with the immunotherapy except for skin rash, but apparently everything exhausts my dad. The prednisone ( for MG) is exacerbating labile emotionalism and anger. We are tapering 5 mg q2weeks so is going to take awhile for him to get off it. His mind is clear but we find him somewhere else and he is not living a quality life.

Our hearts are broken because we are even questioning why we went down this road. He continues to see commercials for immunotherapy and wonders why he doesn't feel like the people in the commercials.The cumulative effect of the cancer/age/chemo/radiation/immunotherapy have been more than tough. One day, just one day I would love for him not to feel shattered.

Thanks again for the link:)

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1 reply
vchen | @vchen | Mar 15, 2019
In reply to @nenners "Nivolumab in Patients With Type B3 Thymoma and Thymic Carcinoma (NIVOTHYM) (NIVOTHYM In the uk. I..." + (show)
@nenners

Nivolumab in Patients With Type B3 Thymoma and Thymic Carcinoma (NIVOTHYM) (NIVOTHYM

In the uk. I went to the Marsden because nothing was really working. Saw Dr Popat who suggested this phase 2 trial checking for acid / alkaline levels but it is helping me with B3 since 2006

Jump to this post

Thanks Nick. I have sent an email to the trial contact email. Hope they get back to me soon. I'm also thinking to reach out to Dr Popat in Marsden. Going to the UK can be an option for us. Val

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nenners | @nenners | Mar 16, 2019

It is confusing and very challenging trying to find treatments as there are so many points of view but the emerging science is giving some hope to a diseases that are little understood. My journey was one of repeated surgeries over 10 years, chemo and radiology but the B3 repeatedly returned. Was accepted on the opdivo trial at the Marsden, not been without some challenges but it appeared to be reducing my tumours. A year ago I was told there was no treatment as my diseases were inoperable... so it puts you in a difficult place where you do clutch at straws. I think it’s worth a mail to Dr Popat at the Marsden who did acknowledge my initial enquiry. I wish you well and pray that there will be something that gives you hope, because without hope it is a bleak world. Nick

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Moderator
Colleen Young, Connect Director | @colleenyoung | Mar 18, 2019
In reply to @gailkattouf "@colleenyoung thank you for the MG link. I will take a look. My dad is losing..." + (show)
@gailkattouf

@colleenyoung thank you for the MG link. I will take a look. My dad is losing hope and he doesn't seem to take a personal interest in knowing about his condition. I think it is too terrifying. His weakness is beyond profound. Prednisone 60 mg PO and IVIG every 3 weeks and he is still getting weaker and more discouraged, so may be it wasn't MG...neurologist said he definitely has severe peripheral and motor neuropathy and thought it could be MG.

He is also thru 2 treatments with Keytruda. We were told that we may not have symptoms at all with the immunotherapy except for skin rash, but apparently everything exhausts my dad. The prednisone ( for MG) is exacerbating labile emotionalism and anger. We are tapering 5 mg q2weeks so is going to take awhile for him to get off it. His mind is clear but we find him somewhere else and he is not living a quality life.

Our hearts are broken because we are even questioning why we went down this road. He continues to see commercials for immunotherapy and wonders why he doesn't feel like the people in the commercials.The cumulative effect of the cancer/age/chemo/radiation/immunotherapy have been more than tough. One day, just one day I would love for him not to feel shattered.

Thanks again for the link:)

Jump to this post

Hi @gailkattouf, I know this is tough. My dad also didn't want any information about his condition. He didn't want to know about possible side effects. He just wanted to deal with the ones he got. For him knowledge wasn't power. For me it is. At times I understood and at other times I didn't. It was hard to swallow when he didn't want to help himself. Anger was also something I had to deal with. Luckily he threw that anger only at me and not my mom. Thus we divided the roles of mom took care of dad and I took care of mom. Still it was hard to witness.

Gail, is the plan to keep going with the Keytruda treatment?

REPLY
1 reply
gailkattouf | @gailkattouf | Mar 22, 2019
In reply to @colleenyoung "@gailkattouf, I appreciate the update. Your dad must so appreciate your investigative research into his symptoms..." + (show)
@colleenyoung

@gailkattouf, I appreciate the update. Your dad must so appreciate your investigative research into his symptoms and advocating for his care. You may be interested in connecting with other members about MG here:
> Groups > Autoimmune Diseases > Myasthenia Gravis* https://connect.mayoclinic.org/discussion/hi-everyone-let-me-begin-by-telling-you-some-of-my-story/

Here's a discussion about Keytruda by lung cancer patients on Connect:
> Groups > Lung Cancer > Immunotherapy and chemo; Keytruda side effects https://connect.mayoclinic.org/discussion/immunotherapy-and-chemo/

However, when I searched on Connect for Keytruda and thymic cancer I found @mddelaney64's profile. While Michael hasn't posted any messages on Connect yet, I looked at his website https://thymiccarcinomacenter.com. I know how rare this condition is and he looks like he's gone through a lot of work to put together stories and information. It may be helpful for your investigations. I also hope @mddelaney64 will post his experiences here.

Gail, how did the meeting with the oncologist go last week?

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@colleenyoung

Thanks Colleen.

My dad developed pneumonitis/pneumonia and is currently hospitalized. He now requires oxygen.The CT of chest/abdomen/pelvis showed decrease in primary tumor size but new metastasis to adrenal, liver, pelvis, psoas and trochanter. What we thought was a degenerative shoulder is now actually looking like bone mets. His inguinal lymph node enlarged and was just confirmed as large squamos cells. We are going home on hospice.

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gailkattouf | @gailkattouf | Mar 23, 2019
In reply to @colleenyoung "Hi @gailkattouf, I know this is tough. My dad also didn't want any information about his..." + (show)
@colleenyoung

Hi @gailkattouf, I know this is tough. My dad also didn't want any information about his condition. He didn't want to know about possible side effects. He just wanted to deal with the ones he got. For him knowledge wasn't power. For me it is. At times I understood and at other times I didn't. It was hard to swallow when he didn't want to help himself. Anger was also something I had to deal with. Luckily he threw that anger only at me and not my mom. Thus we divided the roles of mom took care of dad and I took care of mom. Still it was hard to witness.

Gail, is the plan to keep going with the Keytruda treatment?

Jump to this post

No more Keytruda. He is home on hospice. I believe the pneumonitis has taken its’ toll and a sudden massive disease progression left us no alternatives. We were all shocked. Even at 85 he is not prepared to die and we had such good early results so we thought. We prayed we would make it to point where would be able to get Keytruda. I am not sure if the massive and sudden distal disease progression was hyperprogression from immunotherapy or just a nasty aggressive cancer.

My dad had things he was looking forward to. We were planning an each trip but he is too weak. My mom is devastated. My sister and I are loving and supporting them both as they need it.

I am hoping the spiritual counselor will help us reframe our perspectives and we can stop crying. We value life, celebrate health and have gratitude for all the 84 years of amazing living. It’s been a beautiful ride for my dad with plot twist he never could have imagined.

REPLY
1 reply
Moderator
Colleen Young, Connect Director | @colleenyoung | May 4, 2019
In reply to @gailkattouf "No more Keytruda. He is home on hospice. I believe the pneumonitis has taken its’ toll..." + (show)
@gailkattouf

No more Keytruda. He is home on hospice. I believe the pneumonitis has taken its’ toll and a sudden massive disease progression left us no alternatives. We were all shocked. Even at 85 he is not prepared to die and we had such good early results so we thought. We prayed we would make it to point where would be able to get Keytruda. I am not sure if the massive and sudden distal disease progression was hyperprogression from immunotherapy or just a nasty aggressive cancer.

My dad had things he was looking forward to. We were planning an each trip but he is too weak. My mom is devastated. My sister and I are loving and supporting them both as they need it.

I am hoping the spiritual counselor will help us reframe our perspectives and we can stop crying. We value life, celebrate health and have gratitude for all the 84 years of amazing living. It’s been a beautiful ride for my dad with plot twist he never could have imagined.

Jump to this post

Hi @gailkattouf, I've been thinking about you and your family. How are you?

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boola | @boola | May 20, 2019

I was diagnosed with Thymic Cancer September 21, 2017...... Surgery on October 9, 2017

REPLY
1 reply
Moderator
Colleen Young, Connect Director | @colleenyoung | May 21, 2019
In reply to @boola "I was diagnosed with Thymic Cancer September 21, 2017...... Surgery on October 9, 2017" + (show)
@boola

I was diagnosed with Thymic Cancer September 21, 2017...... Surgery on October 9, 2017

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Welcome to Connect, @boola. Did you have any treatment after surgery in 2017? How are doing today?

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