I meet with a surgeon at MDA tomorrow to schedule when to put in my spacer. The rad onc told me even after having the spacer I still may no be able to get proton therapy for pretty much the same reasons as above but Dr. Javle doesn't seem to think that's going to be a problem so I don't know. Hisprazr- Who is your insurance provider? Does your husband go to MDA? Hope all is going well with him now.
I too believe in miraculous healing and have strong faith. No we don't always understand Gods way but we know that he knows what's best.
I have an appt with Dr Aloia about the spacer and proton therapy next Friday. My oncologist is Dr. Javle, who does your husband see?
Thanks everyone! I will update after my appointment on the 20th
I have an upcoming appt with a surgeon at MDA to discuss putting in a pump and doing Proton Therapy. Does anyone have any experience with his and/or know anything to share about it?
Yes, this is a local oncologist following what Dr. Javle says. Or supposed to be anyway. When it takes 6 hours they are doing everything separate, when t is faster they are doing my fluids at the same time as the Gemzar and Cisplatin. So it is still all being ran the same length of time I think, just several things at once instead of separate. I am tolerating it well and have never been sick from chemo. I'm just anxious to get ack to MDA and see Dr. Javle . Kris, my WBC was always high too until this last time it was low. But I have a uti infection is probably the reason. My hair hasn't really fallen out either but it did start getting so thin that I had to cut it off short. How long as your husband been on chemo? Glad he's doing well with it. Thanks everyone!!
Thanks for the response. I am 30 weigh 142 lbs and labs are always fairly good. Hemoglobin is always low and WBC was low for the first time ever. I get two anti nausea bags, then fluids for 2 hrs which she has started combining with my Gemzar that runs about 70 minutes and my Cisplatin runs for about an hour. I also usually get potassium which I did not notice this time. It would all be fine if not for the fact that the first time I spoke to the Dr. About it he wasn't very happy and made them start doing it 6 hours again, then when it happens again and I ask he tells me they have plenty of experience and know what they're doing. Then why did he get on them about t the first time? All I did was ask I never said they didn't know what they were doing. I will just wait till next MDA trip and talk to Dr. Javle and get a clear answer. And no, I'm not on any clinical s. The chemo has always been 6 hours long and now it's not and thats all I know. Felt good to get that little rant out and thanks for all the helpful info Karen. Maybe if I show that to my local Dr. He will better understand my concern and look for a better answer on his part to give me!
Thanks for the response Kris. Mine is done through a port. I would just feel better if it was done the way MDA says it should e done and to me the slower the better. They're just rushing it now because they have been getting so busy but that is not my problem. You know what I mean?
Thanks Jason. It's frustrating, seems like it should be done the same way every time. My Gemzar is done over an hour and I was told that is the only crucial thing. But to me, I think the fluids are crucial as well. I do drink a ton of water all the time!!
I am currently on Gemzar/Cisplatin. On my MD Anderson orders it says chemo should be 6 hours. Sometimes it is and sometimes it isn't. I have talked to my local oncologist about it before after it only taking 4 hours and he said he would talk to infusion and he did and it went back to being 6. Then last time it was bak to only 4. Expressed my concern to the Dr. This time and he said t s fine that it doesn't matter. For anyone else on this same regimen, what's your thought on this? It concerns me. If MDA says hours I think I should be a chemo for 6 hours not 4.
Re: Phone Consults with MD ANDERSON (or other cancer hospitals) (17 replies, posted in General Discussion)
24k does not sound right to me either. I have insurance, but I know in the past my grandmother went there and she did not have insurance and was not rich either! Have you talked with your local oncologist about maybe trying to coordinate with Dr Javle? Best of luck to you!
Thanks everyone. Surely I will snap out of it soon!! I really don't want to have to be on any anti depressants if I can at all help it!
Since my diagnoses in April, I have done extremely well. I have stayed positive, changed my diet, handled treatment exceptionally well, and have had good results. Ever since my last treatment though I just have not been able to get it together. I'm tired, I don't want to eat, I don't want to do anything, and really flat out don't care about anything. I am finding myself falling into a deep depression and I don't know why this has come on so sudden! Anyone else experience this? I just can't seem o snap out of it.
Dr. Javle told me a lot of Drs frown on transplants because when they first started doing them back in the 90 s the outcome was very poor. He said back then they were just doing them for anyone with this and now they know that it isn't the best solution in all cases. Now that they look at the individual and what to test for the outcome is better.
I'm sure they just don't really know what to do where your at. The oncologist I originally had in ft worth couldn't even properly diagnose me. (She diagnosed me as cancer of an unknown primary) She put me through a colonoscopy, endoscopy, endoscopic ultrasound, mammogram that led to a breast biopsi, and a brain MRI and PET of course. She kept saying a CT wouldn't show anything and that's what MDA diagnosed me off of. I don't see why your local oncologist wouldn't work together with Javle. Best of luck, can't wait to hear an update!
Re: Survival...Please tell us your latest milestone (93 replies, posted in Good News / What's Working)
All these milestones give so much hope!!
The number on Dr. Javles card is (713) 792-2828. But I think you have to call patient affairs for an appt. Also, if you google him somewhere I know his email comes up. So long as there are mets outside the liver transplant is not an option but later on down the road if the chemo kills it all and it stays that way for a while then it may be a possibility to see if I would qualify. He really gave us so much more hope than the previous Dr. He even went over different things to prolong my life if the transplant ends up never being an option. My previous doc just sad we'd keep doing different chemos till the no longer work. I have a son to raise, that was not good enough for me. Where is your husband being treated at? You may talk to your local oncologist about working with Dr. Javle. I do know that several docs do that. Good luck to y'all and remember that God is the ultimate physician!
The reason they gave me about switching docs is if they did it whenever people wanted then they would be doing it all the time every day and it messes with your treatment. Good cells vs Bad cells, I have no idea what they are that was just his way of wording it in English I guess. He did tell me he thinks I probably have the good cells because if I had the bad ones then I would probably just be getting worse and not responding to treatment. The testing isn't something that will be done right now unless I have enough tissue left which I don't think I do.
Had an awesome visit at MDA! I had been trying for a while to switch to Dr. Javle and kept having my request denied. Thursday I had a very emotional phone conference with the Director of the department which I thought still led to no where. So today I'm in the room waiting and who walks in but Dr. Javle!!! I was shocked and happy. The decision to switch me was just made yesterday. Anyway he said my scan looked good. I've had shrinkage and the CA 19-9 had gone down. He gave me so much more hope than my other Dr. He said he wants to do molecular testing to see if I have the good cells or the bad cells. If I have the good cells, then there may be a possibility of a transplant later down the road. He told me to stay positive, make long term plans, and exercise. Just to remind everyone, I'm stage 4 intra hepatic with mets outside the liver. I am currently doing Gemzar and Cisplatin.
Bob & Nancy,
Prayers for the both of you and for Jeff.
Guess its different switching within MDA, I don't know. When I first went there I was "cancer of an unknown primary" so that's why I didn't get Dr. Javle to start with.
It has kind of got me disappointed in MD Anderson. I'm going to talk to the director and if that doesn't work I'm going to find someone else to contact. I'm not afraid to cause a big stink about it. I know the Dr. I have now is the assistant director in the gastrointestinal department so i don't know if that may have something to do with it since its the director that makes the decision. I'm not very happy.