Judy M.
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Posts posted by Judy M.
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My Medical Oncologist's A.P. called me about my port question. She says the Radiation Oncologist will expect a chemo port and they can work around it. Also, that it will be right beneath my collar bone and they can put it on the right if they need to. Plus the radiation field will be very small. Just passing on the info. I got. So, Meloni was right on and I feel much better about getting the thing after hearing from you guys. Thanks to all of you who shared.
Judy M
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Thank you Meloni. Thinking left side because I had 2 nodes under my arm removed in surgery last year. They are just being cautious about lymphedema issues on that side. Doubt I'll have any since there were only 2 removed. Thanks so much for sharing. It makes a big difference being able to hear from people who've walked this road when making decisions.
Judy M
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Have sent the info. to the surgeon who'll be placing my port and will probably also ask my Radiation Oncologist what he thinks. Thank you, Tom.
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Thank you so much, Julie. I really appreciate you sharing your experience with me. Especially since you've had both.
Peace,
Judy M
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Surgeon's office called yesterday to make appt. to have port put in for chemo. I actually ask my Oncologist if I'd get one because of reading what Tom has said. They will want to put whatever on my left side because I've had 2 nodes removed on the right side. Problem is I watched and Emmi video they sent and it will be right over my upper left lung which is exactly where I'll be receiving radiatiion. This would seem to be a problem. Plus, I didn't care much for the risks involved with having a port implanted in my chest. Shot off a message to my surgeon telling him about the radiation and asking if a Picc line or something else would be possible. My daughter says a Picc can only be placed in your right arm. Anybody had experience with another alternative for chemo and blood draws? Thanks for your help. Will probably be sending a load of wuestions now that treatment is starting.
Judy M
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Tom,
Thanks so much for sharing that there were changes during your treatment also. I've been concerned about that at times, but I really like both my Oncologists and have no desire to change. They are at the same hosputal and meet together on a regular basis with one another and my Pulmonologist. My breast cancer treatment was just so straightforward. It was laid out first visit with my Med. Oncologist and went like clock work. I'm learning that this lung cancer is a very different beastie. During my set up for SBRT I didn't itch (thankfully) but my hands go to sleep from being held immobile over my head for so long. Same when I have a P.E.T. scan. Already know and love my Radiation Techs. They are wonderful, caring, cheerful team. Makes a big difference.
Judy M
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Good morning fellow travelers. Was listening to a testimony from a cancer survivor some time ago and she said something I've found helpful, so thought I'd share with you guys. She said, "The disease is going to do what the disease is going to do, the doctors are going to do what the doctors are going to do, and God is going to do what God is going to do. All you have to do is mind your joy." Helps to keep me focused when my mind scatters. Also, read that some studies show that vitamin E may help prevent lung fibrosis resulting from radiation. Suppose it can't hurt to try that. Have shot a note to my Oncologist asking if there are any vitamins and minerals I shouldn't take during radiation or chemo. Did set up session for SBRT yesterday. Radiology Oncologist now says they are going to do SBRT on the 2 tumors in my right lung rather than the one in my left. Then radiation/chemo concurrent on the one in left lung. The plan appears to me to have gone through a number of changes, but I'm happy to be getting SBRT on 2 rather than just 1. I have both a Med. Oncologist and a Radiation Oncologist. Not sure they're communication is always the best. Feeling good today and planning to enjoy it. Hope all of you are also.
Judy M
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This isn't a burning question, but I am curious. So far, I have almost no symptoms from my cancer. A slight cough that has actually gotten gradually better since pneumonia cleared up. My question is about weight. I keep reading that lung cancer causes weight loss. I've actually GAINED weight. I weigh more now than I ever have in my life. Not overweight yet, but getting close. Did any of you gain weight? There are some funny things on this jouney. About a week ago I weighed and my weight was the same so I thanked the Lord that I hadn't lost any weight. Then I had to laugh and say, "Well, Lord, that's the first time I ever thanked you because I HADN'T lost any weight. I'm thankful but also puzzled.
Judy M
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I'm sorry to hear about your upgrade, but glad to hear you can take Keytruda. Have heard of some good results with that. Telling family is very difficult. I also have 4 grown children. We'll keep praying for one another and trusting God's heart. Bless you.
Judy M
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Cindy
He referred to N.C.C.N. or National Cancer Committee when he said this treatment had just come in to standard of care. Tried to look it up, but you have to log in. Could get far enough to see that non small cell lung cancer ( which is what I have) had just been updated. Hope that helps if anyone wants to look into it further. Will keep you guys updated on how it goes.
Judy M
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He told me it was just coming in to standard of care. Looked it up somewhere and now he says it's standard of care. I have a recording of where he said this. I'll trying to find where he refers to it and post it for you.
Judy M
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I think it was the result of a study my Medical Oncologist was a part of. If you google Durrani Oligometestatic Lung Disease you can read it on the net. So far I have no spread anywhere else. Only in my lungs. That's my best guess Cindy.
Judy M
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Thank you, Tom. The Oncologist explained it to me as treating each lung as a separate cancer. It's different. Have a brain M.R.I. scheduled end of next week right after start ( or completion-don't know how many treatments I'll have yet) of STBR. P.E.T. in February showed no mets. Praying that's still the case.
Judy M
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Finally got a date to start treatment. Will begin next Tuesday. Learned why the Radiology Oncologist didn't want to do the stereotactic surgery on all 3 nodules as the Med. Oncologist originally wanted to do. He felt that it would be too toxic to do stereotactic concurrent with chemo. But, from what Tom has said that may still be an option down the road if necessary. So, stereotactic on the 1 nodule in left lung which is the largest and then radiation concurrent with carbo/taxol on the 2 in the right which are both less than 1 cm. Was looking at my health record on an app my hospital provides the other day. Rather than saying I have stage IV it reads that I have stage I left lung and stsge III right lung. Find that interesting. Has anyone else seen that? Hope you guys are all feeling good today. Still praying for you Suzanne.
Judy M
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Tom,
Thank you for your continued support. I belong to 2 public libraries and will check to see if either has your book available. Pretty sure one of them will figure out a way to get it for me if they don't. I feel like I'm overusing the forum right now, but so glad it's here. Not just for questions but to share what I'm learning. None of it may be new to others, but I figure you never know, someone might benefit from it. I agree that the quality of my life is in my hands and I intend to have another good day today. God bless you.
Judy M
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Tom
Just saw your response to my baldness question. Thank you for replying. And, as you see from previous post that is what I'll be receiving. Good to know hair will grow back. Just need to get prepared for it with something to cover my head until that happens. Since it seems I have a couple of weeks before chemo starts I'm trying to get as prepared as possible for it.
Judy M
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Have yet another question after confirming the chemo I'll be having. It will be carboplatin/taxol. This appears from my research to be a standard combo. Learned there's about 100% chance I'll lose my hair with taxol, but the greatest chance of that being a permanent situation appears to be with taxtere which is a similar drug. My question is whether there are any vitamins I shouldn't take during treatment. Also, for my ladies who also had breast cancer previous to lung cancer learned yesterday I must stop taking the anastrozole that I take daily to prevent breast cancer from returning during my chemo. Got this info in answer to a question I ask during chemo education with N.P. I don't think she had thought of this because she had to look it up. Probably because the 2 primary cancers thing isn't the norm. So, my sisters in this situation might want to ask the same question if any of you are taking hormone blocking medication. Also, has anyone tried juicing during treatment? Read a bit about this. Don't know whether it promotes healing, but even if it doesn't would seem an easy way to get those fruits and veggies the docs want you eating.
Judy M
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Tom,
Thank you. I found those and have read 1 of the articles. Will read the others. It does concern me somewhat that there seems to have been some disagreement between my Medical Oncologist and Radiology Oncologist on how best to treat me. Seems they brought on another Radiologist to help plan the radiosurgery. The way it was explained to me today is that they're treating each lung as a separate cancer. Rather unique way of looking at it. But I had prayed and decided whatever plan was mapped out I'd accept as God's will. And so far as I can tell there are no guarantees with any treatment plan when it comes to this anyway. You just soldier on. Tried to find your book to read but only found it available on Amazon for Kindle. Is there anywhere I can get another format. Thanks for being there for all of us.
Judy M
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Suzanne
Thank you so much. I'm sorry to hear that you"re sad. It seems the longer time I've had to pray and come to accept my diagnosis the easier it has become emotionally. I'm a big fan of Elizabeth Elliot. She counseled that when something really awful happens you should think of what you'd be doing if it hadn't happened and do that. She called it 'doing the next thing.' That has helped. And doggedly turning my mind to good thoughts each time I start to obsess over the situation. Which is so easy to do. Especially on days that I see a doctor. That doesn't change anything. Just ruins the good time I could have had if I wasn't doing that. And my obsessing won't change anything. I guess I'm saying that I'm just trying to accept the things I can't change and keep a quiet mind. I can't control what the disease may do to my body, but with God's help I can control what I let it do to my mind. I'm going to pray for you every day. Let me know what you learn about your planned treatment.
Judy M
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Oh, and I want to add that my Oncologist told me today that he took the Radiologist to some medical site ( can't remember all these terms but I have it recorded and can find it if anyone wants to know) and stereotactic surgery is now standard of care for stage IV. Good news I think.
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Chemo with costumes!
in JUST FOR FUN
Posted
What a great idea! You go girl!
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