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Worse before it gets better? Stage IV lung cancer

andreab86
Posts: 1
Joined: Jun 2017

Hi everyone, I am new to this site and wanted to get some insight or encouragement from people who know what I'm going through. I am 31 years old and joined this group because my Dad has cancer and I need some support from people who can understand and that can maybe even offer some advice or encouragement. 

My Dad was diagnosed (late January) with Stage IV lung cancer non small cell with mets to brain, live, lymph nodes and bone. So far he has had 2 rounds of chemo, cyberknife on his brain stem to remove cancer, radiation (10 days straight on brain and spine (preventative)) and 4 rounds of opdivo immunotherapy. 

Its been a rollercoaster, he was hospitalized for awhile for pneumonia then had to be on oxygen at home then he had chemo and started to perk back up and then he seemed to make a huge improvement and got off the oxygen completely and his breathing is great but since the 10 days straight of radiation to his brain and spine and then immontherapy, he is completely fatigued, like nothing I've ever experienced before. He is having a hard time staying awake to even eat, God bless my Mom for forcing him to eat high protein shakes and high calorie foods when he is awake. 

I know he is suffering from depression and anxiety because he can't really do anything at all and before all this happened, he was always busy and doing house projects and just generally enjoying his retirement. 

We tried giving him supplements as well as cannibis oil (which helps him sleep and takes away some pain) but he is still fatigued and just very out of it.  He is having his first scan since treatment began today and then Thursday we meet with his Oncologist to see how he is responding to the immunotherapy, I am praying its positive but its hard to think its going to be when he sleeps most of the day and is so depressed (with good reason)

Can anyone relate to this or offer any advice on things that have helped you or your loved ones? I feel so alone in this. 

Thanks so much in advance for your time and feedback - it means more than you'll know. 

 

anne_janevret's picture
anne_janevret
Posts: 12
Joined: Mar 2017

Hi Andrea,

I know it's really a hard time for you and your family, and it's great that everyone is helping out to make your dad feel better. My mom had breast cancer that had mets to her lungs. Juicing vegetables helped her feel better. Here's a link to juice recipes for you to try out: https://juicerecipes.com/health-conditions/juicing-for-lung-cancer/

jorola's picture
jorola
Posts: 235
Joined: Mar 2016

How did the scan turn out?

The treatment are also going to cause him to been very tired but yes depression is very common as well.

Just being threre - but not hovering is best. Talk whenhe wants to - even on the hard stuff. Help your mom in every way possible and I am sure you are already doing that.

Just wishing your dad and your whole family peace and comfort.

Lwest
Posts: 4
Joined: Jul 2017

Hi. Im am new to this site also and it really is comforting to engage with people going through the same think my wife and i are going through.

My wife was diagnosed with stage 4 lung cancer which has metastasized to her brain she also has one of the lymph nodes with cancer. Due to the size of the tumor in her brain which was 4.5cm x 3.0cm and the location they were able to remove surgically. After a 2 week wait to recover from surgery they did a cyber knife treatment 3 times. We now must wait 2 months before the next scan to confirm whether or not the cyber knife treatment was effective in removing the remaining cancer cells. We are now started the first of 6 chemo secessions to attempt to kill the cancer in the lung and lynmp nodes. The first secission was June 28 2017. of course we anticipated all the worse(mainly due to google). My wife Lynda actully did very well the first 2 days following chemo. By the third day the fatigue was starting.(she never had nause) This fatigeu continued for several days, it was so bad she could not get off the couch alone. It was breaking my heart to see my wife like this although I knew it was coming it didn't make it any easier. After 5 days of this i decided to reach out to a friend who had gone through chemo while fighting colon cancer. He told me that his Oncologist had prescribed him Aderall for his fatigue and mild depression. I reached out to her doctor to ask about trying aderall and he all but bit my head off. Of course i felt like i had done something wrong. After a day or 2 i had had enough and was able to find my wife a couple of adderall from that same friend. After doing as much research as i could to be sure that the aderall would not act adverse with any other medication she was takeing we deciced to try the adderall. OMG!!! This medication has changed her life thats her words. She has energy she is having conversations with family and friend again. It is almost like having the old person back.

It really shocks me that more oncologist are not willing to think outside the box while working with cancer patients. I tried to explain to her doctor that the Mayo clinic had actually donr studies in 2010 with the use of ADHD meds and cancer patients. Again he wanted nothing to do with it.

We now have a prescripton for the aderall, but it was not easy. I had to call every doctor in a 50 mile radius to finally find 1 that was willing to see m y wife. After pleading my case to the doctor she agreed that aderall may help with my wife and her fatigue. We are so thankful that the 1 doctor gave us a chance. My wife has been taking the aderall foe a week now and we have been out of the house everyday. We know this is not a cure to her cancer but it a medication to give her a little energy and a sense of well being.

With all that said this may not be for everybody. My wife and I are dealing with a terminal disease so we are willing to think outside the box for a better qulity of life.

I just wanted to share with anyone who may use this info to better their qulity of life.

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