sallypa
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thank you all for the encouragement and advice. i am not familiar with foundation one. my sister is being treated at UPenn. we have also been working with fox chase. it was fox chase that said she has a mcl 1 mutation and to look for clinical trials dealing with that type of mutation. still no luck but i keep searching. i will look more into foundation one and see if they can help. thank you kris!
thank you for the good wishes! the doctor did remove one of the tumors and the preliminary report is that it is cholangiocarcinoma. not a big surprise but now the question is what to do next. he said there are other small spots on her lungs. they are not sure if they are cancer too. she still has a tumor in the other lung. the surgeon and oncologist are going to meet. they may decide to remove the other tumor or they may say to do chemo. i don’t really know what to hope for anymore. as i said before, this is her 4th surgery and every time they remove it from one place it comes back someplace else. it won’t just go away!!
my sister is going to have surgery tomorrow. she has a tumor in both lungs. the doctor is going to remove the tumor from the one lung and than they will check it to see if it is cholangiocarcinoma or a different cancer. from what he told us if the test comes back negative for cc than he will remove the other tumor in a couple weeks. if it is cc than the only option would be chemo. this will be her 4th surgery in 4 years and 2nd in 6 months. it just won’t go away!!! i don’t know how she does it. to look at her and talk to her you would never know she even had cancer let alone what she has gone thru. we are trying to find some clinical trials. dr told us she has mcl1 mutation and to look for clinical trials to deal with that mutation. so far haven’t found anything.
i just wanted to post the results of our second opinion. we met with dr today. i hope this will help jetcm with his wife. it may be something to discuss with her doctor. we were given a few options. one was because her tumors were small and located kind of in a cluster in both lungs and not scattered throughout her lungs that surgery could be done. it does have risks but don’t all surgeries? the second was for cyber knife which sounded like a good option to us. the third was chemo but he told us the two chemos i mentioned previously while being given for lung tumors he didn’t feel they would be too effective with cholangiocarcinoma tumors. finally he said to look into clinical trials. he said my sister has the mcl1 gene mutation. he thinks this mutation is the cause of her problems and if they can find an effective treatment to suppress this they may be able to help her more. so far i have found nothing on any clinical trials but i will keep looking. the bad news about the visit is the concern of a spot in her pelvis. they are hoping it is scar tissue from a surgery but if it is cancer he said the surgery wouldn’t be the primary choice for treatment.
to jetcm. please ask your wifes dr if cyber knife or surgery is an option. my sister has had 3 surgeries in about 4 years. they are rough but they have given her more time and a good quality of life. more time is what we hope for so that maybe better treatments and a cure can be found.just wanted to post what my sisters oncologist has suggested for treatment of her lung tuners. he says he thinks the chemo’s vectibix and erbitux may be the best treatment. i have briefly looked up these chemos and they appear to be used mainly for colon cancer that has spread. my concern with these in my short time researching it is that both have side effects that refer to lung disease and difficulty breathing. we are going to get a second opinion about treatment options so hopefully i will have more info soon.
i dont know how common it is but my sister also has tumors in her lungs. the drs hadnt really been concerned until the scan she had last week. the tumors were very small. they now seem to be growing and more are appearing. i am not sure what the next plan is but i wanted to let you know that you are not alone in this. i hope and pray things work out well for your wife. when we get a plan i will post it.
i am sorry you are having a hard time with this chemo. the oxiliplatin can be rough. my sister had that. it was very strong and she had some side effects but she pushed thru the cycles and it did help her. the side effects went away after her treatments and she has been doing pretty good since she finished. a pity party every now and than is needed. this is a tough battle so its always good to come to this site and get out your frustrations just as long as you remember to always keep fighting. hang in there and stay strong. i will keep you in my thoughts and prayers.
my sister had the gem/cis chemo and that didnt help much. the side effects were minimal but after completing the cycle she had a new tumor and had to have another resection surger. the dr than tried the oxiliplatin/xeloda combo and although the side effects were difficult she has at least had some success by her ct scans not showing any tumor growth after 5 months since completinig the cycle. she is due for another ct scan in feb. it is a difficult decision as each person reacts to the oxiliplatin differently. these decisions are never easy. i wish you all the best.
hi jennifer,
my sister was on the gemzar oxiliplatin treatment. she did have bad side effects while on it. the neuropathy in her hands an feet wasnt severe but was bad at times. she also had a bad reaction to the cold. it is a very difficult treatment but so far it has been effective. she stopped her cycle in the summer and so far thank god all the scans she has had since than have been good. her first treatment with the 5fu did not have the same effect. as soon as she stopped that chemo they found more tumors. hang in there with your mom and all the advice here is great. gloves, warm drinks, stay inside as much as possible and know that the side effects will go away after the cycles of chemo are completed.pam,
i am so sorry to hear your news. i know you cant help but worry. try to think positive and continue be the great support for lauren that you are. my sister had a spot on her liver and they were concerned it was a new tumor but it turned out to be a lesion. i will pray for a good result.
take carehad some great news yesterday. my sister went for her ct scan and it was clear! she will get the summer off from chemo and go back in 3 months for another scan. even though we know this cancer is always lurking around the corner we are going to try to relax and enjoy the summer.
haven’t had much to update lately but yesterday my sister had an appt with oncologist. she completed her cycle of oxiliplatin and xeloda about two weeks ago. after initially having severe reactions to the oxiliplatin they lowered the dose for the final round and it was much more tolerable. they have now scheduled a ct scan for the end of june to see if anything shows up. we wanted the test to be sooner as it will be well over a month since chemo stopped when the scan is done. we are praying for the best. we had a nice memorial day weekend and are planning a busy summer full of health and happiness. we just have to keep moving forward.
my sister started round 3 of chemo yesterday. they did lower the dose and gave her benadryl to try to alleviate the side effects she was suffering. something worked because she tolerated the oxiliplatin much better this time. our question was is the lowered dose strong enough to do its job. they really couldnt answer. we will just have to wait and see. there are always questions in your mind about if your making the right decision. have to try to push them out and keep thinking positive and praying for success.
