Judy M.

Recent brain scan shows no mets. Port is in place without any problems. Radiologist called and they were able to make a plan to do SBRT on all 3 of my tumors. Which means chemo probably eveey 3 weeks instead of every week. Thankful to hear all that.
Judy M
 
 
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Recent brain scan shows no mets. Port is in place without any problems. Radiologist called and they were able to make a plan to do SBRT on all 3 of my tumors. Which means chemo probably eveey 3 weeks instead of every week. Thankful to hear all that.
Judy M
 
 
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Hi Cindy,
Thanks for your suggestion. Yes, I've had a biopsy (many, in fact) and the diagnosis is:  primary adenocarcinoma of the lungs, and primary malignant melanoma in lymph nodes.
Originally we thought the lung funk "Larry" was melanoma.  It made sense. I have melanoma and melanoma likes lungs.  But when it didn't respond to any melanoma treatment (while other tumors were) we biopsied it and found out that it is adenocarcinoma of the lung. Larry the lung tumors eviction is in a week.
Julie
 

Judy,
Unfortunately, I experienced a troublesome delay waiting for my first treatment. First a week long in hospital scan and test session, then a 10 day wait till first in office consult with my oncologist. Then his treatment plan was surgical resection, so about 10 more days waiting on the surgeon. The surgeon declined to operate and that resulted in an additional delay. Starting treatment in my experience meant waiting and frustration. So I understand. 
But, once treatment started, delays ended. Treatments went like clockwork. So you have that to look forward to. 
Stay the course. 
Tom

Well, I only thought I was starting treatment. They did C.T. and set up for SBRT last Monday and said they'd call me when they had the plan ready. Waited all week and called them Friday. Said they'd been working on my plan all week and would call me next week. Is this normal? It's been 6 weeks since I was diagnosed and I've yer to receive a single treatment. I'm praying for patience
Judy M

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Well, I only thought I was starting treatment. They did C.T. and set up for SBRT last Monday and said they'd call me when they had the plan ready. Waited all week and called them Friday. Said they'd been working on my plan all week and would call me next week. Is this normal? It's been 6 weeks since I was diagnosed and I've yer to receive a single treatment. I'm praying for patience
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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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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What a great idea! You go girl!


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I think we can all agree that chemo stinks.  I had four rounds of cisplatin/pemexetred last year and I'm 3 weeks into 6 weeks of carboplatin/taxol for a recurrence.  Last year, my girlfriends and I decided to have themes for chemo. One session was 80s and the last session was Mardi Gras.  We had beads and boas for everyone.  We're doing the same thing again this year.  We had spring fling, beach fun, and today's pajama party.  For some reason, my husband wants no part of the costume concept!  
I'm sharing this in the hopes that it will inspire you to find a way to get through chemo with a smile.  If we don't laugh, we cry.  

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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I have a port on my right side, which is the same side as my primary cancer and metastases. A nurse had told me I should talk to the radiologist surgeon who performed the surgery about placement on the left side, since I would be receiving radiation on the right side. The surgeon said this wasn't an issue (although I can't recall why, I'll have to dig for some info), and placed it on the right side anyway. it would be good to chat with the surgeon (is he/she a radiologist surgeon?), and ask them to explain more clearly why the port must be placed on your left side, how effective or ineffective it will be in terms of receiving radiation therapy, and to talk to you more specifically about these risks that concern you. (heads up, I love my port. So much better than a picc or a needle stick.) <3
P.S. It's fantastic that you're advocating for yourself. Good doctors have no problem discussing these details with patients. 

Hi Judy,
I have a port (from a former cancer life) and I love it.  It's really easy and just about pain free.  It's on my right side with no problems. I have both blood draws and infusions done through it.
I've also had a PICC line.  This I did not like.  it's a pain as the tubes are stitched to your skin and any pull or tug or whatever and it pulls on the stitches.  Also as I understand it, a PICC line really isn't made for long term use either.  Oh and showering is a pain with a PICC line as you can't get it wet. 
This was my experience. But with all of this said, do what is comfortable for you!  
Shalom,
Julie

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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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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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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I meant more from the chemo than the cancer itself. Sigh. I blame it on my age.

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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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Thanks, Tom. I knew you had lost weight. But sounds like it was more from the chemo than the treatment itself. I've considered that I may be thankful for this extra weight when chemo starts.

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Sounds right, Mally. I'm probably using my dx as an invitation to eat since I can't blame it on chemo yet. Now I know I'm not the only one.

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JUdy, So Sorry to hear about the "upgrade".  This is not what I think of when I think of upgrade... I think of looking down on my boarding pass and seeing a 1 digit seat number... but, I digress.
I was on Keytruda for melanoma.  I had an infusion every three weeks for almost 2 years.  It was easy, for the most part.  Afterwards I was tired and feeling "flu-like" for a few days, but after that I felt fine. The wash, rinse, repeat cycle of Keytruda got a bit monotonous, but I was able to schedule it to fit my schedule. Also comparatively in the world of cancer treatments, I found it pretty easy.  And best yet, it worked. I could feel my melanoma tumors shrink and I am now no evidence of recurrent disease (NERD) for melanoma.  This is awesome!
Wishing you all the best!
Shalom,
Julie