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Title : Lomustine Side Effects
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Lomustine Side Effects

Hello everyone,

New here, but have been reading since last Februrary when my brother, James (33 at diagnosis, 34 now, married with 3 kids under 6), was diagnosed with Stage 4 GBM. He had a full resection in March of 2017 at UT Southwestern in Dallas and had the standard of care with TMZ + radiation. He also followed a loose ketogenic diet and was doing some supplementation then (I'm not quite sure what - we don't live in the same state so my mom is our "middle man" in communicating everything to me!). He then enrolled in a clinical trial to receive Nivolumab in combination with chemo.

James tolerated this treatment well in terms of side effects, but was kicked out of the trial when he showed regrowth.

His doctors recommended to put him on Lomustine. He was nervous about the possibility for severe lung side effects and decided to forgo taking this chemo (this was a few months ago). He took a trip to Italy with his wife, ate what he wanted and really had a good time.

Upon return, his next MRI showed aggressive growth and growth in what was once a "spot" but now is clearly a tumor. Additionally, it is growing toward the "midbrain" so his doctor said another surgery was probably not going to be a future option. This was in June of this year. His doctors were also pretty upset that he'd chosen not to take the chemo. My brother did not communicate this with them, so I know that was part of the frustration and I'm wondering how this has impacted (if at all) their attitude toward James as a patient.

I was fortunately able to attend this appointment with him and the doctors were pretty upset to begin with. I also brought a list of questions based on the PDF Ben Williams and Stephen have created/maintained. They answered all of my questions, but I think they may have assumed James didn't go through with Lomustine for the first time because we read the book - which is not the case. Anyway, I got an odd vibe from both doctors after asking my list of questions...

After this appointment, James decided he would take Lomustine. His doctors also said they could and would combine it with Nivolumab, but due to some process of insurance having to deny it twice before they could get it, he has not received an infusion of that yet with the chemo. Their plan is to do this on his next appointment and with his second round of Lomustine. His next appointment is next week, I believe.

Sorry that was a long intro...

Now for my question: can any of you share with me your experience of side effects with Lomustine? James took his first pill on June 25. Since then his state has been:

• bedridden for the majority of the time
• vomiting/nausea (he's taking Zofran for this)
• mobility of his right side is worsening all the time. He cannot move his right arm/hand. He picks it up with his left hand to move it around. My suspicion is this has to do with too high of a dose of DCA after reading more here. He stopped taking that just a few days ago.
• difficulty walking - now uses a wheelchair
• headaches
• cannot speak very much or very well
• difficulty opening eyes

Now, there are times when he is NOT like this and has energy, but the majority of the time since taking his first chemo pill, his side effects have been what I've listed above.

Is this normal?

My mom has reached out to the doctors and they ordered him to get blood tests done. After those were submit, they never replied with anything regarding his symptoms. I'm curious if this has anything to do with what the doctors think of my brother's future or if there are communication problems (maybe a bit of both).

I would really appreciate some insight into what you all have experienced with this chemo. I've read through a few posts and am trying to discern if his symptoms are side effects or if something worse is going on.

Thank you!

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