Another Recurrence

[RJKD]

Hey Connor. So sorry to hear of the tough situation you're in. You are one really strong person. I'm praying and praying for good news to come for you. Stay strong.

[jfert]

Connor, Keep fighting buddy. you have a lot of guys praying for you and in your corner.

[RWA]

Hi Connor,

Just read your update. Very sorry to hear things are not moving in a better and more definitive direction for you. I would like to believe that as you mention in your post - multiple treatment modalities - surgery, radio, onco are all in play. Which to me sounds like you have some options and that the delay you are experiencing is a team of doctors working together to get on the same page on how best to deploy those treatment modalities when the standard playbook goes out the window. Don't give up keep fighting and don't be shy to push the doc's this is not a time to be concerned or apologetic for advocating for your life. I'm pulling for you man !

[LivestrongMoose]

Hey Connor I can definitely sense you are flustered.

Last month I talked to a lady from a testicular cancer group whose son had a similar path you've been on just reading your bio. After he went through HDC he needed radiation on his brain 6 months after he was working out and had terrible head pain and found it there. He is almost 5 years cancer free since his radiation.

I wouldn't worry too much about the lung thing until there is definite proof of anything.

Stay strong Connor!

[EdOneBall]

As RWA said, sometimes it takes time for all of your doctors to get together and debate treatment options. I understand your frustration: when I was last hospitalized during chemotherapy, there was a two-day lag between learning some bad news on my CT and when my oncology team finally decided on a treatment-plan.

During that lag-time, my mind went to the worst places: assuming I was terminal, that the docs were clueless, that I was a medical mystery beyond help. In reality, my team had different ideas about the best way to treat me and needed to really pour over all the data to come to a consensus. Their consensus is giving me a good shot of beating this, when I thought I was beyond hope.

I'll bet that your team is formulating an excellent strategy for beating your recent developments...you just need to hold-it-together until they share with you the gameplan. Easier said than done, I understand that all-too-well.

[Conor1988]

Thanks everyone, for keeping me positive. This last month of waiting has been the hardest of my life, and I was feeling pretty gloomy/bleak on my last post. However, finally, I got some good news since all of this began again. They did a repeat CT scan of my chest, and the lung nodule did not grow or change! It was only a month, rather than the standard two, but the doctors are unconvinced now that it is cancerous and we will move forward with the radiation of the brain and spine over nine weeks! This made me so happy! I had many treatment options, but the radiation and chemo were mutually exclusive and the chemo was dramatically less effective.

I should begin treatment on 8/10. Thanks everyone for their positive thoughts and energy. Looking to beating this once and for all now!

[RWA]

Good news on the lung nodule ! Best wishes getting yourself cured now.
Ross

[nito]

I'm very glad reading the news about the lung nodule Connor.
It's so easy to tip others. In many cases i feelt that few words could calm down me when i was very depressed, but it's very comforting enter here and see that we are fighting (in differents ways) against the 'same'. Mens from all over the world.
Keep strong Connor (it's so easy to say....i know) and please update your news (i'm sure that will be good news from this point)

Like RWA and others said, the best wishes for you from Spain. Suerte y Salud amigo.

[LawnMM]

Keep fighting buddy. I'm sorry you're having to go through this. Keep family around if you can for support.

[Conor1988]

Thanks Nito and LawnMM! I appreciate, very much, the support.

I start treatment on Wednesday, which I am so eager to begin. In preparation for it, we took one last look at my spine. To have "our eyes wide open" as my doctor said (this is Dr. Oh, a radiology oncologist at Massachusetts General Hospital).

Unfortunately, it confirmed that I do have leptomeningeal disease, as there was clear evidence of metastic disease in the spine. I was not surprised about this as over the last week or two I have started to have symptoms consistent with leptomeningeal disease: loss of sensation in my hands and feet and spreading up my legs and arms, weakness in my legs, etc. All of which have been worsening by the day.

No one has really seen this before and no one really knows what to say as far as my prognosis other than, in theory, this is curable. As Dr. Oh said to me: "I promise you that we are going to give you every chance humanly possible to fight this." I am taking that with confidence, knowing, of course, that there are no promises with cancer (other than to try).

Going to get an MRI of the brain today, moving it up from next week, just to get the clearest picture of what is going on. My treatment will still start on Wednesday, but Dr. Oh is consulting with other doctors about what the final dose should be. Shouldn't add time, but it might. I took a leave of absence, so how long it all takes does not bother me.

Here we go....

[Dook]

Conor,

I don't know if it can help, but I found an abstract of a similar case :

Abstract
We report a case of a patient with isolated central nervous system relapse of classical seminoma, refractory to intrathecal and systemic chemotherapy, but successfully salvaged with craniospinal axis irradiation. A 44-year-old man with bulky Stage II classic seminoma obtained complete remission with four cycles of cisplatin etoposide combination chemotherapy, but relapsed with lumbar vertebral metastases with epidural spinal cord compression 5 months after completion of primary treatment. He underwent laminectomy, local radiotherapy, and salvage chemotherapy. Two months later he developed cranial nerve palsies, and magnetic resonance imaging confirmed leptomeningeal disease. After brain radiotherapy, systemic and intrathecal chemotherapies were begun but tumor recurred around the cauda equina, producing paraparesis. The patient received salvage craniospinal irradiation, with resolution of paraparesis and cranial nerve palsies. Thirty months after completion of craniospinal radiotherapy, he remains in complete remission. We suggest consideration of craniospinal axis irradiation as salvage therapy in patients with isolated central nervous system relapse of seminoma.

[Conor1988]

Incredibly helpful! Thank you! Do you happen to have a link to the full study? Thanks!!

[Dook]

No I just found the abstract. You have to register or pay I think to get the full study.

Here the link, maybe you can create an account :

http://www.goldjournal.net/article/S0090-4295(98)00098-3/abstract

http://www.ncbi.nlm.nih.gov/pubmed?term=9609651

You should ask Mike if he has an account member or if he can get the article. I guess (maybe I'm wrong) he works in medical stuff.

[PNW mom]

Does this link work for you?

http://ac.els-cdn.com.ezproxy.library.ubc.ca/S0090429598000983/1-s2.0-S0090429598000983-main.pdf?_tid=34219270-5d99-11e6-8833-00000aacb361&acdnat=1470682506_34b61462157498e09c056e09afc066a8

[Dook]

It asks a barcode and a PIN to log...