Tom’s Story

Site created on November 19, 2019

On November 14, 2019, we received news that no one wants to hear.  A diagnosis of cancer.  Specifically, a rare cancer of the thymus gland, that is invading the superior vena cava, causing Tom's symptoms of dilated veins on his chest, neck and abdomen, and facial swelling.  Because this cancer is so uncommon, we are not 100% sure what Tom's treatment will entail, but we will be traveling back and forth from Mayo Clinic to see some of the world's best oncologists and surgeons to learn more about how to fight this tumor.  Chemotherapy, radiation and invasive surgery will be required, and it will be a long journey, but we are going to beat this! 


Everyone's support and friendship has already helped us so much with the processing of this news, and we are so grateful to have access to the best of the best at Mayo Clinic.  


We are so thankful to have so many people lifting us up during this time, and we plan on posting updates to this website so that anyone who wants to can stay in the loop.


- Tom and Ellen Malmanger

Newest Update

Journal entry by Ellen Malmanger

Another Mayo recheck yesterday resulted in some treatment plan updates:

Yesterday's MRI showed growth in two of the liver lesions identified in December. While the biopsy they attempted in December of the liver was non-diagnostic, the fact that two lesions grew essentially confirms that they are areas of cancer metastasis, not benign changes. The tumor on Tom's diaphragm, confirmed to still be thymoma via biopsy in December, is also growing slowly. 

Stage 4 thymoma is already rare enough, but extrathoracic metastasis (spread of the cancer outside of the chest cavity - such as to the liver) is apparently extremely rare. (Everyone can tell Tom he already wins at being the most unique - he can stop being such a rare bird now! 😅 ) There are documented cases of extrathoracic mets of thymoma, but they are few and far between. This makes predictions about what comes next tricky. The good news is that the liver lesions are growing very slowly, and the oncologist predicts that liver function shouldn't be impacted unless they grow 10-15 times their current size - so that gives us a lot of time to try to slow/stop their growth. The plan is for Tom to restart the same chemotherapy protocol he was on for a year and a half (Jan '22 - May '23) ASAP, and to return to Mayo for another recheck in 2 months.

Some may have heard/seen that Tom rapidly lost almost all of the hair on his head/beard over the holidays. We saw a dermatologist at Mayo, who confirmed that the hair loss is caused by something called alopecia areata, an autoimmune condition that targets the hair follicles. The doctor said that it can be a bit unpredictable - the hair is likely to grow back, and some people never have a repeat of the hair loss, but many have relapses. Thankfully, this doesn't impact Tom's physical well-being at all, and he's handsome no matter what his hairstyle. 😊 I suppose if we have to add an autoimmune condition into the mix, this is at least a pretty tolerable one! 

Initially, we were distressed to read the MRI report yesterday, but Tom's oncologist did an amazing job in assuring us that while spread to the liver is rare, and rare can be scary in medicine, he does not foresee this impacting Tom's quality of life any time soon. Tom continues to feel great, and he tolerated the chemo very well last year. Of course, needing to start chemo again is never great news, but we are optimistic that he will continue to tolerate it well and that it will slow tumor growth significantly, as it did with previous tumors. His response to chemotherapy will decide whether or not they want to do further radiation later this year. 

In the meantime, we are looking forward to a tropical vacation in a couple of months to enjoy our toes in the sand. Thanks to everyone as always for the love and support - we love you all! 

- The Malmangers

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