grumpygulls
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« on: September 09, 2009, 04:18:31 AM » |
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what will happen now? He had just finished the Alimpta and started the Cis and pow they coded my husband. WE were told we had to wiat several hours and finally he was allowed to go home, we will not go for further visits to the Dr. until another wek is over, however he had to have more blood tests. He was put on Benadryl and they gave him meds that afternoon.
What will happen now. Is y=there another drug they will use or what?
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Mellissa at SokoloveLaw
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« Reply #1 on: September 09, 2009, 07:14:18 AM » |
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Grumpygulls- I am so sorry to hear what happened with your husband, that must have been incredibly scary. How is he doing now? Since I am not a medical provider I can't give you medical advice, but I do encourage you to request a meeting with his doctor before your next scheduled visit to discuss the reaction and what your options are now. When you speak to the office you may want to explain the reaction and that you have questions/concerns to talk to the doctor about. Hopefully they can fit you in to the schedule. I'm also hoping others who may have experienced something like this will offer you support and suggestions. Please keep me updated and let me know if I can help in any way. You may also try contacting the Nurse Practioner at the Meso Foundation; she is a wealth of information about medications and medical options ( www.curemeso.org) for mesothelioma patients. You and your husband are in my thoughts and prayers. Mellissa |
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grumpygulls
Newbie
Posts: 14
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« Reply #2 on: September 16, 2009, 08:14:50 AM » |
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Hi, know no med treatment info here, just want to know what is available with the Alimpta other than Cysplatin. We have great confidence in our cancer Dr. He has given us up to date info as I have found, he has the Univesity of Wisconsin behind him and usable by him plus other resources so we feel he has a good background. He is an up front person that seems to tell it like it is. The trouble is we want to know more. We do not have to go through the cancer center, we talk with him.
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baitlady
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Posts: 46
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« Reply #3 on: September 17, 2009, 08:51:05 AM » |
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I know that carbplatin is often an alternative to the cisplatin. How ever I've never spoken to a patient who's had a reaction like this. You could go to curemeso.org & conatct Mary Hesdorffer. She's the nurse/practioner with the Mesothelioma Applied Research Foundation & works exclusivly with meso patients. I understand your desire to know more as I'm the same sort. It's very good to know you have such a good relationship with & confidence in your doctor. That can mean all the difference. My best wishes on continuation of treatment.
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Mellissa at SokoloveLaw
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« Reply #4 on: September 18, 2009, 07:02:43 AM » |
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Grumpygulls-
I agree with baitlady on this one. Mary at the Meso Foundation will be able to give you a wealth of specific medical information (as she has worked with my meso patients and doctors). You can reach her by calling #1-877-363-6376 and ask for Mary the Nurse Practitioner.
It's wonderful that you have a good working relationship with your doctor and medical team (that's not always the case). Keep talking to him and asking questions. Together with the information from Mary and your doctor, you should be able to cover all your options. Best of luck.
How is your husband doing now? I hope that he is feeling better after the scare and that you have both been able to get back into your normal routines (if there is such thing as normal when dealing with meso - things change so quickly with this disease). My thoughts are with you.
Mellissa
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grumpygulls
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Posts: 14
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« Reply #5 on: September 25, 2009, 02:34:19 AM » |
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Hi, Thanks to all who have replied. We went for his next chemo and were told no Cysplatin, his reaction was too drastic, however Carl seems to think he wants it. He was told we do not want you to die today!
I wrote an email to the nurse practitioner tonite. He is not himself at all. He was supposed to go on a Boy Scout weekend with 2 of his buddies in the morning and this evening called and told them he could not go. He is short of breath - not eating now and dizzy. He and I have an understanding and I will live up to it to the best of my ability. I feel that I know too well what will be happening to him. I have prayed to die several times due to my health and it will be like that for him too. That is life. I had a heart condition. We are getting good feedback, but feel I need whine and cheese tonite. Sorry. Thank you all very much. If he continues will call the gals at the Cancer center and work harder with them. The best of luck to all of us.
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Mellissa at SokoloveLaw
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« Reply #6 on: September 25, 2009, 10:22:38 AM » |
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Hi Grumpygulls,
Sorry to hear your husband is still not feeling well. But glad they will not be trying Cisplatin again. I'm concerned that he is not himself, short of breath, has a decreased appetite, and dizziness (while these can all be symptoms of mesothelioma), I'm glad you reached out to his medical team. If you do not hear back from them promptly, I would consider calling them to discuss how he is currently feeling. They can advise you in regard to what else to look for and when to bring him in to be seen by a doctor.
You deserve a little wine and cheese. It's important to take care of ourselves as caregivers. Feel free to vent to us anytime. You are in my thoughts.
Mellissa
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grumpygulls
Newbie
Posts: 14
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« Reply #7 on: September 29, 2009, 01:33:03 PM » |
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Hi, Talked with Melissa and she too talked about carbplatyn and agrees with what we were told that NO platyn types should be used with his health history and reaction. She is sending me more info too.
He is still not eating and is dizzy. One day at a time. I am greatful for being able to talk a bit ande the comfort, care and backup being given.
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grumpygulls
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Posts: 14
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« Reply #8 on: September 29, 2009, 01:38:20 PM » |
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Sorry was talking to friend Melisaand writing - the nurse practisioner is MARY. Carl had moew blood work today again. Barbara
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Mellissa at SokoloveLaw
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« Reply #9 on: September 29, 2009, 02:11:32 PM » |
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Barbara-
I'm glad to hear you are keeping on top of things and communicating regularly with his medical team. Mary is an excellent medical resource. Hang in there and keep taking things one day at a time. Be gentle on yourself - dealing with this disease is a full-time job. We are here whenever you need us.
Take care.
Mellissa
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grumpygulls
Newbie
Posts: 14
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« Reply #10 on: October 14, 2009, 12:06:17 PM » |
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Update a bit. First I have never gotten info back from the other site. I have checked in and now that things have settled a bit will try and contact her again. The Dr. feels strongly since he had such a horrid reaction to the cisplatin that NO tyoe of platin meds will be used as the next could be his last. He had alimpta yesterday and was super high the rest of the day and all night long. He was like a kid on a sugar high wide awake, could not sit still, had to be doing something, so he cleaned my kitchen cupboards for me. We played cards, cleaned the living room and he did 4 loads of wash and put away. I fell asleep about 4 qnd h was still going. This will be reported to the cancer center qas he was not like that the last time he had it.
Barbara
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Mellissa at SokoloveLaw
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« Reply #11 on: October 15, 2009, 07:36:07 AM » |
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Hi Barbara-
Thank you for the update. Glad things are going okay. Keep in close contact with your doctor and medical team. Definitely keep them informed about any side effects from the treatments. It may help to keep track of symptoms and side effects in a notebook or journal so you have a record of them over time. And it's easier to remember if it's written down when you are talking to the medical team. I'll keep you both in my thoughts and prayers.
Mellissa
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ellachan91
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« Reply #12 on: April 13, 2010, 02:38:38 AM » |
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