Julie in SoCal

Hi Mich,
Just my opinion, but this sounds like another version of blaming us for our illness. I  think that our state of mind can affect our quality of life in recovery, and that stress reduction, prayer (ours and others), positive thoughts, visualization, etc, can be helpful for some of us.  But I distrust someone who treats cancer as a psychosomatic illness that requires psychotherapy for "successful treatment".  And I note that this person appears to be selling a particular brand of psychotherapy. I'm not buying!
Bridget

I would like to hear how others deal with the ups and downs of this disease. Just about the time I have shoved it out of my mind and gotten on with the business of living a scan comes due and the scanxiety that comes with that then something shows up on the scan and the wait to see the doctor starts. How do you deal with these highs and lows?

Hi to everyone! I had my surgery on May 31. Developed a significant air leak & also pneumonia (both lungs). In ICU for 5 days out into stepdown unit for 7 days. Thanking God for being with me. My pathology came back good. Cancer confined to right upper lobe-which was removed. Lymph nodes were negative. Now for working on regaining strength & building lungs up. Blessings to all!

Thanks for your response Julie.


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I had my end of chemo scans done yesterday and was getting the results next Wednesday but went to my gp to get some scripts and he had a copy of my results so IM CANCER FREE ....i was so happy i was crying walking around the supermarket trying to text my kids through watery eyes ...
 
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Judy,
Just to be clear, you've two questions: is recovery from chemo repetitive or does it get more difficult after further infusions and is there a difference between SBRT and 3-d radiation.
First the chemo, my experience is side-effects and recovery from infusions stayed the same after each infusion.  Side effects started and ended about the same time and I started feeling normal about the same time.  So, I did not experience any progression of symptoms or lengthening of recovery time.
Three-dimensional conformal radiation therapy (3D-CRT) is similar but different from Stereotactic Body Radiation Therapy (SBRT).  The difference is 3D-CRT uses beam forming technology to more precisely aim at the tumor while SBRT targets the tumor precisely using computer modeling and computer-aided radiation delivery techniques.  My SBRT aimed at 5 gold implants that were surgically placed around my tumor to ensure precision and account for chest movement while breathing.  The objective is to fry the tumor but the approach is different.  I wouldn't know whether one is better than the other.
Stay the course.
Tom

Hi Jan,
I've used three different drug assistance programs and all three were run by the pharmaceutical company.  All I had to do was apply, send in the paperwork and my co-pay was drastically reduced.  Try the Xalkori assistance website.
The other resource I've used is the hospital's support staff.  The hospital I go to has a staff person who is familiar with various copay assistance programs.  She was the one that has introduced me to the various Pharma programs.
Hope this helps.  These drugs can cost an arm and a leg,
Shalom,
Julie

Thanks, Tom.  I just got my abdominal and pelvic scan results and they are NED, too! Next scan in 6 months. 

Hi Jan,
I've used three different drug assistance programs and all three were run by the pharmaceutical company.  All I had to do was apply, send in the paperwork and my co-pay was drastically reduced.  Try the Xalkori assistance website.
The other resource I've used is the hospital's support staff.  The hospital I go to has a staff person who is familiar with various copay assistance programs.  She was the one that has introduced me to the various Pharma programs.
Hope this helps.  These drugs can cost an arm and a leg,
Shalom,
Julie

Lemon water helps also. Both have backed it off for now

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Had scans last Wednesday and started chemo on Thursday. Doc is wanting to keep scans his little secret until I see him on Wed. I may let him. Lol. Not too bad until this morning when nausea hit in spite of meds. Lemon water and peppermint candy is helping, so thought I'd pass that along. Hope all you guys are doing well.
Judy M
 
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The nausea is the pits ...i feel for you... and i might have to try the peppermint candy because same here that i take the nausea meds but still have to put up with it for a couple of days ...

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Thanks so much Julie, that's a great help!! I actually got a call back yesterday from the Dr. and he said that I've been approved for Keytruda rather than Opdivo, so we will meet with him tomorrow and start up next week. I'm nervous about it because before this diagnosis I rarely put anything but natural products into my body, and so the uncertainty of it all is crazy. But. it is a necessary evil and I am ready to get it done. 

Hi Lbelle78,
I have had Opdivo's twin, Keytruda for melanoma.  I was on it for almost 2 years and watched my tumors shrink away (that was pretty cool!).  Unfortunately my LC doesn't respond to PDL-1 (or Keytruda would have killed it off in the melanoma war).  But I digress...
I had a fairly easy time with Keytruda.  I was a little tired and achy (flu like symptoms) a day or two after the infusion.  Sometimes I had a headache, and my joints would hurt.  But after a few days I was back to my regular normal self.  I was able to work and if I timed it right, travel.  
The thing I learned pretty quickly is to report everything that was out of normal for me to the nurse. They were  a wealth of information and help in dealing with the treatment.  The other thing I learned is that it takes immunotherapy drugs a little while to work and it's possible that you will see pseudo-progression, that it it looks like your tumors are getting bigger rather than shrinking - that's your body at work killing those suckers! - before the tumors start to melt.  Be patient with the patient is what I've heard.  So prepare yourself for the long game, and not necessarily the short game.  
In melanoma land, I have melahomies that did not respond to a PDL-1 drug (Opdivo or Keytruda) until months after they stopped the drug.  But they've had complete response.  May you too have a complete response with minimal side effects.
Hoping Opdivo kicks your LC to the curb!
Shalom,
Julie

Check with her oncologist they should be able to get her signed up

I have my last chemo infusion at 9am next wednesday and ct scans of chest and abdomen in the afternoon and get results the following Wednesday so that will be a fearful week of waiting ...fingers crossed and prayers please ?
 
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Hi Jan,
I've used three different drug assistance programs and all three were run by the pharmaceutical company.  All I had to do was apply, send in the paperwork and my co-pay was drastically reduced.  Try the Xalkori assistance website.
The other resource I've used is the hospital's support staff.  The hospital I go to has a staff person who is familiar with various copay assistance programs.  She was the one that has introduced me to the various Pharma programs.
Hope this helps.  These drugs can cost an arm and a leg,
Shalom,
Julie

Hi Lbelle78,
I have had Opdivo's twin, Keytruda for melanoma.  I was on it for almost 2 years and watched my tumors shrink away (that was pretty cool!).  Unfortunately my LC doesn't respond to PDL-1 (or Keytruda would have killed it off in the melanoma war).  But I digress...
I had a fairly easy time with Keytruda.  I was a little tired and achy (flu like symptoms) a day or two after the infusion.  Sometimes I had a headache, and my joints would hurt.  But after a few days I was back to my regular normal self.  I was able to work and if I timed it right, travel.  
The thing I learned pretty quickly is to report everything that was out of normal for me to the nurse. They were  a wealth of information and help in dealing with the treatment.  The other thing I learned is that it takes immunotherapy drugs a little while to work and it's possible that you will see pseudo-progression, that it it looks like your tumors are getting bigger rather than shrinking - that's your body at work killing those suckers! - before the tumors start to melt.  Be patient with the patient is what I've heard.  So prepare yourself for the long game, and not necessarily the short game.  
In melanoma land, I have melahomies that did not respond to a PDL-1 drug (Opdivo or Keytruda) until months after they stopped the drug.  But they've had complete response.  May you too have a complete response with minimal side effects.
Hoping Opdivo kicks your LC to the curb!
Shalom,
Julie

Hi guys, can any of you who have been on Opdivo infusions short term share your early symptoms? I'm supposed to start the first full week in June and am nervous about this! My doctor has of course shared all of the potential issues I might face such as thyroid issues, colitis, pneumonitis, but I would like to hear from actual patients. Thanks so much!!

Well, I did have my first radiation treatment last Tuesday. It lasted 10 minutes and was a piece of cake.
Then again Wednesday but then right after I went to chemo. That was different. I got a shot, anti nausea, they said, then there were 2 little bags and 1 large bag and it took 3 hours of sitting in a very cold room. No pain going in.  A few hours after I went home, I started having severe pain in my chest. I do have morphine for that, a slow acting pill I take every 12 hours and fast acting that I can take 4 times a day in addition as needed. And I needed it. My cancer is touching my artery and thorax (I think that's what it's called) and I have a hard time swallowing food or even drinks. I've lost 35 pounds in less than 3 months since this all started.
Okay, then Thursday again my radiation, piece of cake.
Then Friday rolled around, no radiation - it seems the machine went down. So now I have to wait until Tuesday and start the week all over again. So far there's been no changes, nor have they taken any test, so I'll keep posting on that. I'm still positive about the outcome. Just wish it didn't hurt so bad, I had always been told cancer don't hurt, don't believe it, mine hurts like being malled by a few bears. May because of the location of the cancer, haven't been told yet why I have the pain.
Will keep posting, still need to know there are others out there who went through it too. Still scared, but no longer of the treatment, more about the outcome.
Happy Memorial Day to all my Soldier Brothers out there!
DragonKing (Dave)
 

My radiation was given to a tumor on my lung. The tumor was inoperable. I had radiation 5 days a week for 6 weeks. I developed a "sunburn" type burn on my chest and my back, I also developed a burn on my esophagus and it was extremely painful to swallow for several weeks. That's when cold watermelon, cold applesauce, and popscicles became my diet.

It wasn't terrible for me, and everything healed within a few weeks after radiation ended.

Radiation is a lot more advanced than it used to be. I was marked so I could be put in the exact same position each time. The machine rotated around me, and was set to pinpoint accuracy so it would only radiate the tumor.

Each visit was only 20 to 30 minutes long. The radiation was a lot kinder to me than chemo ever was!

Blessings,
Michelle


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Hi Julie, I can understand being freaked out by radiation.  We've all heard that radiation can cause cancer, right?  I've had radiation for two different primary (non-lung) cancers and the effects were different. And I'm still alive, but most recently have had cancer #3, lung. In 2008, I had radiation for breast cancer. I had some burns-- about 2/3 of the way through I developed a severe sunburn-like rash over a fairly large area, and later  blistering, peeling and rawness over a smaller area. Highly unpleasant, but it healed with only a slight redness ( think of the broken veins on an alcoholics nose), and no other scaring. No significant fatigue during ot after. When chemo/radiation was proposed for my gyn cancer in 2011, I was worried about burns and talked to the rad onc about it. She said that skin effects were very unlikely because the radiation was given in a differnt way--as I understnd it, the machine emitting the beams circled around me so that the radiation was more concentrated internally and not so much on the skin. In fact I had no skin effects at all but did have the digestive issues described in my  previou s post.
I recommend that you talk to the rad onc and find out exactly how the radiation will be given and what side effects you can expect. 
I'm NED on both radiated cancers. I'm amazed, especially for the gyn one which was very aggressive and had a poor prognosis. I'm also really grateful  I'm a survivor of 2 courses of radiation, 2 courses of chemo and 3 cancer surgeries. Hang in there, treatment works, even if ti's unpleasant at times.

Pure Aloe Vera gel. I hate this new phone.

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Julie
I had the standard radiation treatment of 33 treatments taken 5 says a week for 6 1/2 weeks for another cancer and just completed 5 S.B.R.T. treatments for lung cancer. I had no trouble at all with it other than some skin redness sort of like a mild sunburn and not painful just itchy. And one cannot scratch it. Very bad idea. That's asking for infection. Will tell you what my Radiology Oncologist told me since it worked very well for me. Use only Dove soap and just sqeeze soapy water over the treat area. Do not rub that area ever. He also had me apply aquaphor on the treated area 1-3 times a day. You can get it at Wal Mart. And the treated area would sting a bit immediately after sometimes. I'd put ours Aloe Vera gel on it before I got dressed again and that would stop it. You can get that at Wal Mart also. I'd heard the horror stories, but had very little trouble with radiation treatments. I'm the opposite. Getting ready to have chemo for the first time next week and wondering how I'll reacte. Seems no one knows because everyone is different. That may be true with radiation also. Don't really know. Just sharing my experience. Hope yours is as easy as mine have been.
Just M

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Marcie,
Four months does sound long but one months was focused on resolving the liver tumor. Still three months is excessive. My definitive diagnosis took about 6 weeks. 
I think it is important for one to have a choice of treatment centers. If your dad is happy, I wouldn't press him to change. 
Stay the course. 
Tom