Refractory large-cell diffuse lymphoma B
Good evening to all,
I just post on the forum because although always keeping hope I feel tonight very lost in the face of this disease that eats my mom 59 years ago for 6 months now. If possible I would like advice, experience, because I feel very alone in the face of this mysterious cancer.
I'll try to quickly summarize mom's situation.
February 2011: Discovery of a first indolent follicular lymphoma continued biopsy of the lymph nodes removed under one of the two arms. Nothing dramatic, a simple regular monitoring is proposed and followed (scanner, tep-scan, etc...). For a year.
February 2012: Mom is very tired, she loses a lot of weight, pain in the legs that become unbearable, and something strange that today still no one knows explain: a facial sleep of the lip and chin on a single Side of the face... his GP asks for a complete blood test, and the results are not good... Platelets at 10 000 and very low blood cell levels, but especially the marker that is authentic: the rate of LDH is at 14900!! The verdict falls "quickly" after toe scan: Diffuse lymphoma with large cells B stage IV. Its extent is quite substantial, the bone marrow and spleen are affected. The hematologist which follows it although informing me of the severity of this disease is however positive: it proposes a protocol of type CHOP on 6 sessions and then an autograft for consolidation.
Then start the side effects of chemo: hair loss, constipation, hemorrhoids, mucositis,... but overall mom supports well, and morale is good. And the TEP scan comes back with good news: The disease regresses, it disappears from the liver and there is little left in the marrow.
However a novelty makes its appearance at the end of the treatment CHOP: one of its arms becomes extremely painful and then loses its mobility. Various exams, and in the end a mass is discovered in the cervical spine. And of course after new exams this mass is of course the lymphoma that makes hers... So to fight this new version 10 sessions of Radiotherapies, which are happening relatively well (with however sore throat and other whatnot but not too bad overall).
A PET scan to validate this series of radiotherapy: The mass is apparently part, but the doctor tells me about tissue infiltration (??). Everything remains quite blurry at this point, I learn that mom is attacking a new series of 3 sessions of chemo spaced 3 weeks (I learned last week that this is Ptwi). So the first one took place a little less than two months ago. First week after his tongue turns blue/black, the Doctor explains to him that it is a hemorrhage caused by the chemo, it can happen... But things are going to get complicated as a result of the second session. About a week later (there are 15 jrs of this so) mom is in diarrhea and her stools are getting more and more blood. So I take him to the E.R. after making a passage to the medical home the day before. A colonoscopy is performed the next day, she has hemorrhagic colitis (suspicion of lymphoma but no return of the analyses to date). She remains 10 days at the local hospital (no place in Chambéry where she is followed for her lymphoma), she is very weak, suffers pain in the back, in the legs, sweats nocturnal, a mucositis carbine prevents her from feeding (so impossible to Regaining strength) and falling asleep from the face that starts again, in short the symptoms of the onset of the disease in addition to the effects of chemo, this is not very auspicious... An injection of platelets (which had descended at 12 000) on Thursday and the hospital sends her home while waiting to return to Chambéry on Monday (for her third session of chemo PTWI).
Friday when I get out of work I go to Mom's, who is exhausted and suffers enormously from her mucositis. She was passing her pet scan control in the morning, it was very hard, she barely stood up. His attending physician proposes to me to fetch Daktarin to relieve it (apparently it works well, its mucositis is far less extensive although still so painful to date). On Saturday we regularly visit her at home with her best friend, she sleeps a lot so let her rest. Yesterday I come to find it around 15h, I find it with 41 ° of fever so we are left for the urgencies of Chambéry (so it is on the spot for the next day). In short the last 15 days have been difficult...
Here we are this Monday, September 3, 2012, I call mom this morning and she announces what seemed obvious (but we still hope that the news is good): The TEP scan is not good, the disease is back...
So I call her hematologist to get a little more information, and she confirms the bad news: lymphoma is again disseminated in the marrow and in the lymph nodes, so it is refractory to treatment. These words are the following "I do not hide that I am very worried ". The shock...
I got out of the hospital a few hours ago, Mom is transfused, and she seems less bad than the last few days (and at least she's in good hands).
But I'm afraid...
I keep hope, and especially thanks to all your testimonies, I read sick people who fight, who also went through very hard times when everything seemed lost and which are now in remission or at least in healing.
Mother is very courageous, as you all she endures all this with an exemplary courage and determination, I am so proud of her, I would really like this fight to be not in vain.
I take the opportunity to say that it is very difficult to have information, it is very complex and the caregivers do not have too much time to explain (and that is hard to manage). I do not know if it is in every hospital and with all the doctors alike?
Thank you for reading me, and I hope to give you better news in the next few days.
Good evening to all.
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