Those Those On Her / Dmi1 Trial

[IRENE FROM TAMPA]

Hello everyone. I have not been posting much lately but peeking in to see how everyone is doing.

I just had my 4th treatment of Herc/DMI 1. I am due to rescan again in 2 weeks so we will see how everything inside is doing. The one tumor in my neck which we can feel does seem smaller and my markers have come down some.

My question - each time I get a treatment I develope fevers. This has happened to me from the very first treatment. I get them right away and they seem to last anywhere from 5-7 days. they can go up to 104. Have any of you experienced this?

I have some pleural infusion around one of my lungs and my belly is somewhat distented so their seems to be fluid there also. I am having a colonosopy next week to rule out anything in my colon.

I have not seen any postings from anyone on the trial and wondered how you were doing. I am praying for good results from this trial and other then those side effects I seem to be having, not bad to take.

Hope to hear from everyone soon and take care.

[Barbara H.]

Hi Irene,
If your tumor markers are coming down you will probably see some good results from your scan. I did have a fever after the first infusion and one again a few weeks ago. However, the fever was just a little over a 100. I have few side effects from the trial, except for nosebleeds which are annoying.

Unfortunately, I have developed inflammation in my lungs and it has been progressing since January. They think the drug is causing it, but there is a slight chance that it could have a different cause. My oncologist will wait for one more scan at the end of this month. If the inflammation is stable or has decreased than we will continue to monitor it. If it has increased I will have to have a surgical lung biopsy to determine what is causing it. If it is the drug, I may have to go off of it for a few cycles, or I may need to stop the trial. This new development is very upsetting to me because I tolerate the drug well and it has put me into remission. My tumor markers have been normal since last fall.

I wonder if you are having a difficult reaction to the drug because you receive a higher dose on the three week cycle. My total dose is higher but it is spread out by having weekly infusions. This drug does affect the liver enzymes and sometimes treatment is held when mine are too high. I never had high enzymes until I was on this drug. Hopefully, you are having all of these reactions because the drug is making an impact on your tumors. I wish you the best and keep us updated.

I have related your story to my team and my excitement that you were allowed to enter the phase 2 trial. I think of you often.

Best regards,
Barbara H.

[chrisy]

irene,i've been thinking of you and hoping you are doing well. i've been on vaca and only peeking in occasionally myself.I have a fever after each infusion. it starts a few hours after and lasts a few days. the first time it was (for me) high at 101+, since then not as high but still enough for me to notice. I usually run at 97.4.I have scans monday,hoping for the best for all of us of course.