Not the best news
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Michele…until others have a chance to respond to the FOLFOX question, I thought to pull up a few posts:
http://www.cholangiocarcinoma.org/punbb/viewtopic.php?id=9771
http://www.cholangiocarcinoma.org/punbb/viewtopic.php?id=9754
http://www.cholangiocarcinoma.org/punbb/viewtopic.php?id=7978
http://www.cholangiocarcinoma.org/punbb/viewtopic.php?id=3819
http://www.cholangiocarcinoma.org/punbb/viewtopic.php?id=3162Re: the bone marrow activity: other cancers metastasise to bone marrow however; we have never seen it with Cholangiocarcinoma. So, I hope with all my heart that your husband is not the exception.
Please keep up posted, Michele, we care.
Hugs,
MarionMichele. please keep in mind that everyone seems to respond differently to different treatments.
If you go to the top of the page there is a Search button, write in ‘folfox’ and a bunch of posts about folfox will appear. You might also type in ‘multiple lymph nodes’ . Or Google any phrases you want clarified. While it can be helpful you will still want to make a list of questions for the ONC, he is the one who will know best. You never know how strong you are until “strong” is the only choice you have!His white blood cell count is normal.
I talked with my aunt that’s a chemo nurse and her read the pet scan results.
She said that the marrow activity could be caused from the chemo but also says it could mean that the cancer has spread there. I will have to question the doctors more. But according to the report it shows multiply lymph nodes through out the body that are infected.
How has everyone dealt with folfox? I have heard from one lady that she wished her husband would have refused it because it just seem to put him on a downward spiral.
Just scared out of my mind and wondering how fast this is going to take him.
MicheleMichelle..Please, make sure to run this passed the physician, as none of us have the ability to accurately answer questions. But I assume that your husband has chemotherapy induced neutropenia. This is not an uncommen and can be treated with drugs such as Neulasta (pegfilgrastim.) In simple terms, the chemotherapy treatments wiped out your husband’s white blood cells. Other than minor bone pain, we have not had many negative comments. Patients are protected against infection, regain stamina and are able to receive chemotherapy. But the one week break from treatment might allow your husband to rebuild his own blood cells. They will be able to determine this accurately with the upcoming blood test prior to FOLFOX treatment.
Fingers and everything is crossed for a fantastic response.
Hugs,
MarionDear Michelle,
I am so sorry you didn’t get the news you were hoping for. The positive side is that your husband is feeling well and I would take advantage of that and do all the things you want to do. I too understand the “numb” feeling you get after news you don’t expect. For me it passed when I got back into “fight” mode.
I am hoping for your husband to respond to the new chemo and to continue to feel well.
Hugs,
-Randi-Dear Michelle,
I am sorry to hear of your husbands latest news and yes, not the news that you were wanting to hear at all. But please do not give up hope. Yes it is normal to feel as you both do after hearing such news, totally understandable. But now your onc has a new plan with the Folfox and lets focus on that and hope that that works better than the last treatment.
I too am not sure what the bone marrow activity and possible marrow stimulant means so I wouldn’t like to take a guess at that either. It could mean what you say Michelle but as I said, I wouldn’t like to take a guess here on that and say yes or no either way. Hopefully some of the others may know more, but as Lainy says best to speak with the onc about that and I am sure that they will explain it all to you.
I know that both you and your husband have just had the toughest of days, but please do not give up hope Michelle. Stay strong and remember as well that we are all here for you.
Hugs,
Gavin
Dear Michele, I am so very sorry about the Pet results. I am not sure what marrow activity means best to have the ONC explain. Not to make light of it BUT sometimes it does sound worse than what it actually means. All the Medical terms and the whys, what’s and wherefores are enough to drive us all crazy. Don’t you wish they would speak English? Take each day at a time, and give the ONC a call and have him explain the PET results to you that you don’t understand. I don’t blame you for feeling numb, sadly it’s a normal feeling around here. Please keep us posted and hope Hubby does well with the Folfox.
You never know how strong you are until “strong” is the only choice you have!Well today we finally got the results of my husbands pet scan. Wasn’t the news we were hoping for. The cancer has spread into lymph nodes. There’s a lymph node up near his collar bone that they could feel with their fingers that’s enlarged. And said there is scattered axillary lymph nodes with low level activity.
Also in the report it says there is prominent marrow activity through tout, suggesting possible marrow-stimulating agent. Does anyone know what that means? That part has me confused.So the doctor didnt do any chemo today and next week he will start a new chemo, folfox. I hope that helps. They r going to redo a pet scan after a few treatments of this to see if it works.
If anyone knows what the marrow activity means please give me your input.
Does this mean it has spread to his bone marrow?My husband is in shock and isn’t sure to to think. All his liver levels are normal and says he dont even feel sick.
I don’t know what to do. Kind of in shock and just feel numb inside.
Michele
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