Mayo Clinic Connect
Am just trying to find anyone to have a discussion with that is currently or has had the struggle with either of these cancers.
It's been awhile since I posted and thought I would update. Not only did we survive 6 rounds of chemo, we made it through 6 weeks IMRT and we are waiting on CT results. Throughout all this, my dad has been a zombie. I asked 5 months ago for his surgeon (pericardial window) to order lab for myasthenia gravis, but he never did. All the docs related his fatigue and weakness to his illness/hospitalization/age. Throughout all of his treatment, outside of a low HgB requiring 2 units of PRBC, his lab values have remained all quite good, but he went from weak and tired to unsteady and collapsing. He started to fall and just related it to his legs buckling. His oncologist reaffirmed it was chemo causing it. Then, when it didn't get better after chemo and with therapy and time, radiation was to blame. However, as I watched him, he just could not connect intent to move to movement, I started to think MG. He might walk a few steps, but after any activity he was exhausted. Like paralyzed with fatigue. He always worked to breath after he spoke or did any activity. His voice was hoarse since first going into the hospital. He gets tired chewing and can only eat moist foods. He does not have double vision, but had it briefly months ago.
We finally got a referral to a neurologist and are awaiting results to learn if my dad also has Myasthenia Gravis. The neurologist suspects he does based on his neurological exam and symptom descriptions. He prescribed Mestinon 60 mg TID and he started it. His voice has come back, no longer a whisper. He is able to keep his eyes open, walking is a little easier. Probably a good indication that he has MG. Tomorrow, we meet with oncologist to get results from CT. If CT results show disease is stable, we are supposed to start Keytruda. I am wondering if any survivors here have tried immunotherapy? If any of you have struggled with MG? And wondering whether the treatment for one impacts the other? Any insight always welcome. I am most interested at this point to improve symptoms of MG and hopefully improve the quality of each of his days.
Thanks so much, Gail
Liked by Colleen Young, Connect Director
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@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?
Liked by Teresa, Volunteer Mentor, gailkattouf
My sister is recently diagnosed with 85% "possible" Thymoma. She just finished 6 rounds of chemo for her lymphoma (diffuse B-Cell, very aggressive stage 4) last year and during the follow-up scans, they discovered the growth in her thymus. 2 biopsies were inconclusive but the senior and supposedly very knowledgeable pathologist reported that judging from the cells and surrounding conditions, he is fairly sure it is thymoma. The thoracic surgeon recommends the removal of thymus (thymoma). We are hoping for a 2nd or even 3rd opinion, but according to my research, thymectomy with large margin is still the most popular solution. Anyone know any doc/hospital we can turn to for a creative 2nd opinion?
I was 37 when i was diagnosed with thymoma. First doctors told me that it may be lymphoma. After 2 biopsies I was 3 stage. They didn't know much only that it was rare that elderly and newborns are more likely to get it. After the removal I started my radiation. 7 days I was done with I got pneumonia. At the time I received the worst news ever. The doctors that performed my removal went to deep & cut a nerve and it paralyzed my right lung. I now have have of my left lung. My life has changed completely. Sorry to ask but how old is your sister?
@tsphere and @adribunny, welcome to Connect.
Tsphere, should you wish to seek a second opinion at Mayo Clinic, here is the contact information: https://www.mayoclinic.org/appointments
You can self refer or ask your doctor to make the referral. Might Mayo Clinic be a possibility for you?
Adribunny, several members have talked about a paralyzed diaphragm and damaged phrenic nerve. Is this what happened to you?
Hi, my husband was diagnosed with Thymoma in 2014. It was a pretty large tumor and it also spread to the lining of the lung (2 nodules were found). They said it's a stage 4 b2/3. We saw the head of the cardio-thoracic department in a major hospital in Sydney. We thought he was good but it turned out to be a horrible experience. This money grabbing doctor scheduled too many operations in a day and only operated on my husband at 8pm at night (he has been on the operating table for more than 14 hours by then). What turned out was that he removed the tumor (with not enough margin) and left the 2 nodules unremoved. How could he had forgotten given he told us multiple times that's what he's going to do (removing the tumour + 2 nodules). His error was eventually found by the oncologist, so my husband had to be taken to the operating table again in 2 months!!!!
After the surgery, my husband had to have radiotherapy, but 2 more nodules on the lining of the lung were found 4-5 months after the surgery. The oncologist decided to do nothing but observed. Then after 1 year when the nodules became bigger, they gave him chemo (cisplatinum & 2 more drugs). The cancer shrank after the chemo but never went away. In Aug 2018, they found the tumor became bigger again, so they gave him another round of chemo (carboplatin & another drug). The chemo didn't work this time with the tumor size remained the same, probably the tumor has gained drug resistance. The doctors decided to give him another operation to remove the tumor. This is most likely the last operation he could have. Here we are in the hospital now. My husband is recovering from the surgery. The surgeon told me the cancer was likely to have spread to other organs. Here I'm, really really really upset. We have 3 young children and my husband is only 50.
I'm at the hospital bed typing this message! I know Thymoma may not be curable but I really want him to live longer and see the kids growing up. In Australia we don't have proton therapy so treatment option is not advanced. My hubbby doesn't cope well with chemo and his first chemo was reduced to a dose of 70% after the 3rd round. I don't know if there is any better way to treat him. I don't know what we can do from here. Can anyone tell me if going to the US would be a good treatment option for my hubby, and if so, how much will it cost given we don't have insurance in the US. Any advice is much appreciated.
Hope this might be helpful? Having had many surgeries and chemo ( cusplstin and entopside) my B3 stage 4 showed little reduction. Now on a trial of Opdivo and after four cycles showing up to 25% reduction and they side effects have been manageable to date. Nick
Thanks Nick! Great info. My huddy did have cisplatin and entopside during the 1st chemo. it shrank one tumour and made the other one dormant. The 2nd time round, they used cisplatin and another drug, but it damaged his hearing so they changed to carboplatin. The 2nd chemo didn't work, despite they gave him the full dose and use a white blood cell booster during the treatment.
I'm so sorry to hear your multiple surgeries and chemo. It must be very hard going through all that. May I know what trial you have participated? Is Opdivo a chemo drug or immotherapy drug? If you could share more info, that will be great. Thanks, Val
Yes lost some hearing to tinnitus and neuropathy in the feet. However the immunotherapy Nivolomab ( opdivo ) is on a trial at the Marsden ( London ) for B3 and thymic cancer. The details are available on line. So far so good for many of my inoperable tumours had 6 fortnightly cycles so far and reduced some tumours by 25% which I feel is remarkable as chemo did little in the way of reduction. N
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
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
@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:)
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
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
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?
Liked by gailkattouf
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