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Hi McFmags, I’m sorry you got into these problems. My mother lived almost 2 years after the diagnosis, she left us in May of last year. I have tried many complementary substances, some have not been able to get them prescribed by doctors (NED-170). It is possible that they have helped above all to calm the side effects, in fact you have never had problems during the adjuvant gemcitabine after the operation, nor during cis + gem. I believe his death was hastened by the wrong use of pain therapy. We also tried mistletoe (we live in Italy and it’s not sold here, I had to buy it in Switzerland). Unfortunately we used it for a short time before the end, I suggest you try it as soon as possible because effects, if any, are not immediate. Your specialist will be able to indicate the dosage and type, they are thin needle bites (my mom did them alone) near the sick area, to stimulate an immune response. I wish you the best, if I can be of more use to you than I have been for my mother, ask me.
Dear ones, we are at the end of the journey. Things have only gotten worse since my last post in March. My mother has been waiting for an evaluation until April 9th. Here the doctor advised starting therapy with folfiri, as my mother had pains near the liver. I asked him if he could wait a week or 10 days for my mother to be able to re-enter a trial in another hospital, and he said that it would be better to try the trial, also because the tac showed an increase in liver metastases and lungs. We waited, but mother was not suitable for the trial, her condition quickly deteriorated, and now she is under unconscious morphine with a few days of life. I will have remorse for the rest of my days for not having made her do the folfiri, even if everything I did was always communicated to the oncologist, and I know that a second line does not give great results. My heart is broken, but I thank you all and wish you the best
Hello everyone, I ask a kind advice to those who have more experience than me, my mom has reached, more than a month ago, the 4 cycles of cis + gem (I think half of the complete cycle) and the oncologist has done tac and rmn for treatment evaluation. The nodules in the lungs did not increase in number but were enlarged by 2/4 mm, and it also appears that the largest lesion to the liver is increased by a few mm. The CA19-9 went back to 1400. My mom is now on stand-by because a severe pain in her right leg started (she is forced to take opiates), it could be a hernia, bone scintigraphy has not metastasized, she should do soon a lumbar resonance. We are waiting for this exam and the orthopedist, but given the times it could happen to stay still for at least a month before hearing the opinion of the orthopedist and perhaps resume cis + gem.
I understand that therapy is not having any effect on the slow but continuous growth of metastases, would anyone have any advice for me? Is it better to wait? I have made contact with other centers to try to see if there is the possibility of entering a clinical trial with Keytruda, or Nivolumab + Ipilimumab, or some other new drug, do you think it’s too early? Can we say that it is useless to continue with gem + cis? Our oncologist is a very kind and helpful person, but in his hospital they do not do clinical trials, and I do not understand what his treatment plan is, he seems very expectant. What would you do in my place? Many thanks to all.Good morning Bglass, thank you very much for your reply. I am looking for other opinions to prepare myself in advance, I have seen that it is a good strategy to anticipate the times in this little known disease, even if I realize that we should work full time on this disease to get a good idea. Every time I read this very useful site, I always find new things. The chemo gem + cis for now is well tolerated (we are only at the sixth infusion), the ca19-9 at the beginning was 1200, after two treatments 1500, now under 1000, seems to lower. The other blood tests are ok, no neuropathy, vomiting, and other things, just fatigue the day after chemo, radiological examinations will be done in about a month at the end of third month. Unfortunately, no genetic tests have been done, so to enter any trial I think we should do a biopsy. Some small metastases to the lungs were from the beginning, they grew a few millimeters but then remained stable until November, now I do not know. An oncologist with whom I spoke said that even in the absence of treatment the disease did not seem to move very fast, is this normal in your opinion?
