Judy M.

We do also have compassionate care drugs available in the U. S that have not yet been approved. I know because my last Oncologist who wanted to try the Opdivo/Yervoy combo next said that was the way he could get that. 
Judy M. 

Hi Cannedy,
Thanks for asking. I am feeling a lot better than a few weeks ago, no more fever and cough.
I am taking Tagrisso. After 45 days of taking it, my tumor went down from 2.5cm to 1.5 cm.
Susan.

We do also have compassionate care drugs available in the U. S that have not yet been approved. I know because my last Oncologist who wanted to try the Opdivo/Yervoy combo next said that was the way he could get that. 
Judy M. 

We do also have compassionate care drugs available in the U. S that have not yet been approved. I know because my last Oncologist who wanted to try the Opdivo/Yervoy combo next said that was the way he could get that. 
Judy M. 

Susan,
No I don't follow a special diet now nor did I during treatment, with one exception.  I took a now called targeted therapy drug -- Tarceva --  in combination with Taxol and Carboplatin in my last infusion series (fourth line treatment). Tarceva destroyed my appetite, went to war against my intestines, and I stopped eating.  Luckily, I'm married to a woman who has a masters degree in dietetics.  She found strong mint flavoring and very tart tasting foods are often appealing for people with impaired appetites while in chemo.  So, she made me mint-Oreo cookie, chocolate mint ice cream.  She churned the ice cream and crushed the cookies in a plastic bag and added it to the batter as it solidified.  I lived on ice cream and, strangely cranberry juice for 6 weeks.  
Martha realized I needed calories to recover from the assault my body was taking from chemotherapy.  Now is not the time to start a diet.  My reading suggest that neither sugar nor carbohydrates feeds cancer cells.  A book called The Emperor of All Maladies goes to great length to describe how cancer cells grow and behave metabolically.  They grow rapidly because they are able to influence the body to build new blood vessels to supply them with nutrients and oxygen.  So sugar and carbohydrates don't feed cancer cells, additional blood supply does.  
Lauren's idea about consulting with Savor Health Nutrition is a good one.
Stay the course (and keep eating).
Tom

Welcome to the forum although I'm sorry you had to join. I am also newly diagnosed stage IV adenocarcinoma. I am on no special diet but I have been told I can not eat beef unless it is well cooked..no pink...no food from buffets, no fresh vegetables unless we clean, prepare them ourselves. No fruit already peeled, cut up at a store or restaurant. It seems they are concerned about bacteria with an immune compromised system more than anything else. Hugs and prayers!

I have had 3 rounds with cancer. My first was in 1992, I was diagnosed with Gallbladder cancer. No symptoms, just one gallbladder attack. For whatever reason, the doctor decided not to wait but to remove it. I had surgery two weeks later. The strange thing was that when I went back for the follow up, I came to a complete stop when we were walking into the building. I can still  remember it so clearly. I had such a feeling of dread pass through me. I told my husband that I had a bad feeling that they found something bad, of course he thought I was being silly. They had, the pathology report came back ,found cancer. Now, it is very rare and they didn't know how to handle. Some research was done and another surgery to clean up and take samples. It was contained to the gallbladder and no further treatment was needed. Then in 2008, I had a routine appointment with my PCP, normal yearly chest x-ray was done. They found a small spot in my left lung. So, tests and more tests. They removed my upper left lobe in April 2008, stage 1B, N0, M0. I started feeling very sorry for myself, moping around the house and eating and gaining so much weight that I could hardly move. One night I decided that I had survived cancer twice but I was going to let the weight kill me. So, I started working out and watching what I ate. I lost the weight and started running. I have done countless 5k's, 10k's and 2 1/2 marathons.  There was still a place inside me that felt guilty for surviving without having to go through treatment.   I was hesitant to tell anyone that I was a lung cancer survivor, still such a strong stigma  attached to it. Fast forward to 2017. Routine blood work, except my PCP ordered a different one that my oncologist didn't order. The numbers were on the high side, wait a couple of months and repeat, higher yet. OK, the start of all the tests again. Small nodule in my upper right lung. Saw a new oncologist (mine had retired), he said let's wait and see, next day it went in front of the tumor board, change of plans, lets get rid of this now. June 20th they removed my upper right lung, stage 1A, N0, no  further treatment need just monitor for the next 5 years. I am walking more and getting ready for my first 5k post surgery. I have decided that I can become a voice for early detection. I have lost family and friends because they waited until it was too late. Former smokers and people with a family history of cancers should get regular check ups so anything can be caught early in the game.I want to let people know that you can have life after lung cancer, it is not always a death sentence. My first 5k is on September 10th and it is for cancer patients, all money raised goes to support the patients in need. I have had a special shirt made up just for my runs.
I can't attach a picture of the shirt, but the back reads:
Early detection works
1992- gallbladder cancer
2008 Lung cancer - upper left lobe
2017 Lung cancer - upper right lobe. 
The front simply states that there is always hope.
 
Thank  you for letting me share.

Isn't the shirt great?  Got lots of smiles from my fellow baldies at the oncology center.

Linda explained it well. In my case, I had 3 tumors, one in my left lung and two in my right. All three were treated one after another with the megadoses of radiation. In S.B.R.T. they hit the tumors with radiation from different directions. Have had standard radiation also for another type of cancer and the difference you notice as the patient is that S.B.R.T. takes longer per session and is accomplished in a lot fewer days. Because I had 3 tumors each treatment lasted 60 to 90 minutes and I had a total of 5 treatments over a two and a half week period. Usually S.B.R.T. is finished in 10 Days or less because they treat every day or every other day. Mine was different I think because I had 3 tumors treated and they were concerned about toxicity. Tom will probably chime in here and give a better explanation at some point. I did a blog post on here where I explained my situation and more about the S.B.R.T. I received. As I understand it this type of radiation had been used for brain Mets for some time. Then they began to use it for stage 1 patients who only had 1 tumor and were unable to have surgery to remove it because of other health problems. Recently it's been used for patients whose tumors are what they call oligometastatic ( I think I spelled that right) meaning limited to 2-5 usually and not spread to other areas. Also the tumors need to be fairly small. Mine were all 3 centimeters or less. The dose of radiation to the tumor itself is higher, but it's pinpointed to the tumor itself so is covering a smaller area. You can google S.B.R.T. for oligometestatic lung cancer and find out more. Hope that answers your question at least somewhat. Tom Galli also had S.B.R.T. and I'm sure there are other stage 1 members on here who have had it also and may want to add more to what I've said.
Judy M.

Linda explained it well. In my case, I had 3 tumors, one in my left lung and two in my right. All three were treated one after another with the megadoses of radiation. In S.B.R.T. they hit the tumors with radiation from different directions. Have had standard radiation also for another type of cancer and the difference you notice as the patient is that S.B.R.T. takes longer per session and is accomplished in a lot fewer days. Because I had 3 tumors each treatment lasted 60 to 90 minutes and I had a total of 5 treatments over a two and a half week period. Usually S.B.R.T. is finished in 10 Days or less because they treat every day or every other day. Mine was different I think because I had 3 tumors treated and they were concerned about toxicity. Tom will probably chime in here and give a better explanation at some point. I did a blog post on here where I explained my situation and more about the S.B.R.T. I received. As I understand it this type of radiation had been used for brain Mets for some time. Then they began to use it for stage 1 patients who only had 1 tumor and were unable to have surgery to remove it because of other health problems. Recently it's been used for patients whose tumors are what they call oligometastatic ( I think I spelled that right) meaning limited to 2-5 usually and not spread to other areas. Also the tumors need to be fairly small. Mine were all 3 centimeters or less. The dose of radiation to the tumor itself is higher, but it's pinpointed to the tumor itself so is covering a smaller area. You can google S.B.R.T. for oligometestatic lung cancer and find out more. Hope that answers your question at least somewhat. Tom Galli also had S.B.R.T. and I'm sure there are other stage 1 members on here who have had it also and may want to add more to what I've said.
Judy M.

Welcome back Judy!
Some of us were worried (me at least). 
I forgot to tell you about scar tissue after SBRT. I still have it. It showed up on my last scan and therefore think you'll have scar tissue also. Let us hope it stays scar tissue!  Mine did. 
Taste problems after chemotherapy, yes I had that. For a long time I couldn't have citrus fruits, raisins, or salad dressing. They all tasted very bitter. So did pasta sauce come to think of it. How long did that problem stay with me?  I can't recall exactly but I had a total of 18 infusions in the course of 3 years. I think longer than 6 months but shorter than a year. It will go away so at least I hope it is soon. 
The PET scan in December will be a big tell. I hope you are "surfing smooth NED" by Christmas. Go on vacation. You earned it. 
Stay the course.
Tom

Hi, Sally. It's quite understandable to be scared when starting a treatment.  We don't know how our bodies will react, what side effects we'll endure. Hopefully some of our members who have had taxotere can jump in on this topic. We're here for you.

Thank you,Tom! Feel much better now that I've heard from you. Pasta sauce is one of the things I still can't enjoy also. Or tomato soup. And I loved both previously. Looking forward to getting my old taste buds back. Had no idea that side effect could last so long. Plus, though I didn't lose nearly all of my hair I lost about 1/3 of it and when the food nastiness comes back more hair loss accompanies it. But this usually only comes around for one day every five or six days now. Thanks so much for responding. 
Judy M.

Thank you,Tom! Feel much better now that I've heard from you. Pasta sauce is one of the things I still can't enjoy also. Or tomato soup. And I loved both previously. Looking forward to getting my old taste buds back. Had no idea that side effect could last so long. Plus, though I didn't lose nearly all of my hair I lost about 1/3 of it and when the food nastiness comes back more hair loss accompanies it. But this usually only comes around for one day every five or six days now. Thanks so much for responding. 
Judy M.

Great news! Glad to hear it.
Juidy M

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Am presently doing Cisplatin/Alimta cycles. Very tired and nauseated day 2-5. Then the tiredness gets better. But for me the nausea hangs on until about day 9 or 10, just not as severe. And then there's the nasty tasting food. This goes on from day 1 to about 7. I don't have the issue with not wanting to eat. Probably because I have 3 says of steroids each round and it eating seems to hold back the nausea somewhat. To me, my second round seemed easier than my first, but that could be because I was farther out from radiation and had found some ways to cope. I've actually gained weight through all my chemo treatments. In fact, I'm very swollen after each treatment. Each on ours about 6 lbs. on me that gradually subsides over the next week. I eat watermelon and cucumbers which are natural diuretics to try to get rid of the water bloat. Had a few mouth sores so make a habit of rinsing mouth with salt/baking soda solution at least every morning and if one pops up more often. For me the nausea that seems to hang on has been the worst. But I've been in an antibiotic that can also cause stomach upset so I'm hoping not having to take that will help next round.


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Katie
As far as I know, you were right about Cyberknife. That's the machine that uses fiducials to track your tumors to do S.B.R.T. ok them. My S.B.R.T. was done with the Varian Trubeam machine which uses C.T. to track the tumors during treatment.
From what I know genetic testing of your tumors is great because it reveals what targeted therapy or immunotherapy drugs you might qualify for. One tumor in each of my lungs was biopsied, so I know each was adenocarcinoma. They were tested for 3 different markers for targeted therapy and negative for all three. Weren't tested for immunotherapy markers. Looks like someone dropped the ball or maybe the samples were too small? There were 2 of them but since my tumors were small thinking the samples may also have been. For whatever reason Oncologist says if testing for immunotherapy biomarkers is done it will be after they do another biopsy. Hoping that doesn't happen because that would mean (a.) I still have one if my original tumors after S.B.R.T. and chemo, or (b.) Another tumor has popped up somewhere. Obviously, I'm praying neither of those scenarios occur. We're your tumors biopsied before you had the Cyberknife treatment? If not I hope the Cyberknife fried the little devils to death and there's nothing left to biopsy.
Just M.

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Thank you. I do hope it's simply the result of the edema. My Pulmonologist says a lung cancer patient shouldn't complain about gaining weight. Lol.

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Thank you. I do hope it's simply the result of the edema. My Pulmonologist says a lung cancer patient shouldn't complain about gaining weight. Lol.

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I'm do happy for your good news. And no need to feel guilty. I'm sure no one on here wants to hear of bad results. Good results encourage us all. Be happy and enjoy! I've really enjoyed following your posts.
Judy M

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I'm do happy for your good news. And no need to feel guilty. I'm sure no one on here wants to hear of bad results. Good results encourage us all. Be happy and enjoy! I've really enjoyed following your posts.
Judy M

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Welcome here Sharae.
Your uncle certainly has had his share of cancer!  Did his doctors tell you what stage and type of lung cancer he has? Would you know what chemo drugs your uncle is on?
The medications you mention are all for dealing with common side effects from chemotherapy.  They are all bone marrow stimulants to help replace white blood cells affected by his chemotherapy. Has he already had a injection of one of these drugs?  A common side effect of this injection (with Neupogen, Granix or Neulasta) is bone pain in the legs and arms. 
What more can you do? Your uncle will need someone to accompany him to doctor consultations.  These are important and if other family members cannot go, you might attend. Here are some common questions folks ask doctors about lung cancer.  And if you or another family member attends these consultations, this might help you understand the words and terms the medical team uses.
I'd encourage your uncle to join our forum and read about our treatment experience. It is comforting to know that many of us have been exactly where your uncle is with lung cancer and if we can live, so can he.
Stay the course.
Tom

He's lucky to have you as part of his care team. You seem to be an amazing advocate. I wish more patients had someone like you in their corner.

The manufacturers of the medications your uncle has been offered may have programs that help with payment.

When I was treated my chemo had to be postponed 2x because of my blood count. I waited an extra week and then wound up needing transfusions before we go go forward with treatment. That necessitated a couple extra visits to the hospital for blood tests and long days in the short stay unit while two units of blood were prepped and thawed.

Time spent researching payment assistance would be well worth the effort. Talk to the oncology social worker at your hospital. They should be willing to help with this.


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Hi Sharae,
When I had  chemo for a non-lung cancer, my neutrophils (a type of white blood cell that fights infection) crashed. I had a fever but no other symptoms and was sent to the emergency room My neutophils tested at zero! I was given antibiotics. After my next round of chemo, I had Neupogen. This was a series of injections I gave myself- it was easy, small needle, right in the belly, where I had plenty of fat. I had no further white blood cell problems. As Tom says, bone pain is a common side effect, but I didn't have it, nor any other side effects.
Neulasta is the same drug in a long lasting form, so that you just get one shot and don't have to give them to yourself.
As a result of my experience, two things I would suggest for your uncle,
1: Check out payment assistance aa Denzie suggests. If your uncle has white blood cell depletion after cancer, medications can be a life-saver.
2. If he has fever during chemo, call your doctor or clinic at once! If you can't get hold of him or her, go to the ER. Typically fever is the only sympton of an infecton when you have neutropenia (low neutrophils). This can become life threatening in a matter of hours if not treated. Don't "wait until morning". 
Best wishes to you and your uncle. He's lucky ha has you for support.
Bridget O

Saw Radiology Oncologist for follow up yesterday. Got specifics on my S.B.R.T. Am writing this because my treatment plan has been rather unique. Hoping if it works out it will help someone down the road. Tom suggested a blog, but have no idea how to do that. So here is what I've done on advice of Med. Oncologist: Had 5 fractions of 1000-1500 centigrays each on all three of my lung tumors at twice a week over 21/2 weeks for a total of 4500-5000 centigrays. S.B.R.T. is normally done daily or every other day. I'm thinking they gave me a couple of days between because of Rad. On. concern about toxicity since I had received the standard radiation treatment of 33 fractions for another cancer less than a year earlier. Physicist assured me the fractions were too high for the cancer to develop resistance in that length of time. Have had no adverse reactions from the S.B.R.T. Now having Cisplatin/Alimta chemo every 3 weeks for 4 rounds. Just completed 2nd round. The difference in my treatment is that I was diagnosed with stage IV because of tumors in both lungs. That would normally mean 1st line chemo. Med. On. gave me the choice to try this for a cure and I took it. We will see when scans come up how it works out. Reason for the option was scans showed no spread of cancer outside my lungs.
On another note ( and this one is a bit embarrassing) have had constant battle with constipation for years and normally take full dose of Miralax daily. The chemo seems to have made this an even greater problem. Was told I could take Sennekot besides the Miralax. No good. Didn't work. Ask for help and Oncology nurse told me to try Prunelax. Had never heard of it, but it works. Hope this helps someone else. Enough misery with cancer treatment for us all without having to deal with this one.
Judy M
 
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