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Thread: Hubby has Lung Cancer that has Most Likely Metastasized :(

  1. #31
    Well hubby's surgery wasn't held off until next week like we suspected it would be, nor was he removed off his blood thinners prior to having it done.

    We saw the surgeon late yesterday afternoon, and he wanted to do the surgery today. He said in hubby's frail, rapidly declining condition that it doesn't make sense to waste another entire week removing him off his blood thinners to do surgery, then have to wait however long it takes after that to finish testing it in order to hopefully get a definitive diagnoses. He said doing surgery while he is on an aspirin and 2 more blood thinners, is Not at all the best method, and it increases the risks a lot more, But under the circumstances he really doesn't have much of a choice because if we don't hurry up, and find out what this is and start treatment he's not going to be around. He did tell my hubby that if he wanted to be taken off the blood thinners, etc. he would, and they could schedule the surgery for next week, but my hubby agreed that time is of the essences and opted to go ahead and get it done.

    Well, Hubby had his surgery this morning, he is home now, and doing well from the surgery. The surgeon said the lymph node was really large so they should have plenty of tissue now to get whatever this is properly diagnosed so he can begin treatment, so that's where we are at right now.
    10/24/18 10:30 AM The love of my life passed away Today, and Life will never be the same again. RIP MY LOVE. I LOVE YOU FOREVER,, and MISS YOU SOOO MUCH ALREADY.

    10/16/18 Hubby was Diagnosed with Epitheloid Angiosarcoma High Grade, and was doing so badly that Hospice referral was made. .

    2016 My Husband DX with Stage 1 NSCLC not documented. They used Stereotactic Body Therapy (SBRT) radiation x 5 treatments. 8/24/18 Now has suspected lung Ca metastasis with Large 4+cm masses noted on each adrenal gland and 1 enlarge lymph node in the lower right lobe of his lung where the original tumor is located, plus scattered glass appearance in that area as well, and 1 enlarged lymph node under his left armpit area.

  2. #32
    Wow, i'm glad he is back home and all is good. I hope they will hurry up now to get the results and the Treatment can finaly start!

    Best wishes Petra
    Oct 15 diagnosed NSCLC stage IV , Mets in lymph nodes,
    Chemo 6 months, Tumour didn't grow but lymph nodes
    New Chemo 4 months, not working, new spot 4mm in Liver
    Aug 16, start Opdivo ,immune therapy
    CT Nov 16 , Tumor shrank, Lymph nodes shrank
    CT Jan 17, Tumor all the same, Lymph nodes on Neck and under arm back to normal, in Lung and Chest a bit smaller
    July 17, 2x3 cm Brain Tumor found, removed in Surgery, now radiation on spot,still on Nivu
    August 18, all still same, living life every day
    Fingers crossed

  3. #33
    Thank you Pet. I hope you are doing well today.

    Yesterday and today have both been good days with him being able to eat and he has only had one small episode of vomiting this morning, but no food was in it, just bile. During surgery they loaded him up with anti-nausea meds to prevent him from vomiting and aspirating it into his lungs while under anesthesia, and that seems to be helping him a lot.

    I also started his CBD Oil yesterday too which should also help with his N/V and appetite so keeping my fingers crossed that this is a new start for him and that the nutrients he is able to take in, and keep in will help him start to put some weight back on, and help give him some energy to be able to help him fight whatever this is.

    I'll let you know if there are any changes, or if we hear anything on the diagnoses, but we are so grateful because the surgeon doing it this way actually save him a week of time for diagnoses that he wouldn't have had otherwise if he had taken that week to get him off the blood thinners first. So one day at a time we will continue on our way. I hope you have a nice day hun, and please let me know how you are doing, and what you are finding out in your journey.
    10/24/18 10:30 AM The love of my life passed away Today, and Life will never be the same again. RIP MY LOVE. I LOVE YOU FOREVER,, and MISS YOU SOOO MUCH ALREADY.

    10/16/18 Hubby was Diagnosed with Epitheloid Angiosarcoma High Grade, and was doing so badly that Hospice referral was made. .

    2016 My Husband DX with Stage 1 NSCLC not documented. They used Stereotactic Body Therapy (SBRT) radiation x 5 treatments. 8/24/18 Now has suspected lung Ca metastasis with Large 4+cm masses noted on each adrenal gland and 1 enlarge lymph node in the lower right lobe of his lung where the original tumor is located, plus scattered glass appearance in that area as well, and 1 enlarged lymph node under his left armpit area.

  4. #34
    Senior User
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    Well, it is good he has the 2nd biopsy behind him and seems to have gotten through it o.k. Now, the dreaded waiting game. Hopefully, whatever the results of biopsy, he can start treatment soon. I just finished 1 cycle (6 weeks) of immunology and it wasn't bad, side effects wise. Now, have to take PET scan and then I play the waiting game.
    My thoughts are with you and your husband.
    Linda

  5. #35
    Thank you Linda.

    It seems like the waiting game is what we've been playing for some time now. Since he ended up in ER on 8/24/18 out on 8/26/18 then back in on 8/28/18 then out again on 8/31/18, and the adrenal masses were found it seems like his decline in condition, weight loss, etc. are the only things moving quickly at the moment.

    Waiting on a Final Report since he was 1st biopsied on 9/14/18, and after multiple tests on it has lead us to very few answers so far, and then them running out of tissue to test requiring him to have to have surgery when he is too weak to even walk most days, and with all tests thus far pointing towards Sarcoma, instead of lung cancer Metastasis, it seems like we've been forced to play that dreaded waiting game for an eternity already.


    I'm so glad to hear that you have 1 cycle of treatments under your belt already with little to no side effects. You are welcome to pull up a chair beside us while waiting, and prayers that everything shows up good on your scan. What meds were you given with your treatment?

    I've had some time to do some research, and if his does turn out to be Ewings/PNET I think we are going to try to push for AMG 479, and RAD 001 treatments as they have had very good success with those. from what I read AMG 479 was only FDA approved in 2017 to be used on Sarcoma, and prior to that it was only available via clinical trials which from the majority of the posts I read where they had great success from it, clinical trials were where they received it for their Sarcoma.


    Please keep me posted on how you're doing, and we can continue to chat while we wait.
    10/24/18 10:30 AM The love of my life passed away Today, and Life will never be the same again. RIP MY LOVE. I LOVE YOU FOREVER,, and MISS YOU SOOO MUCH ALREADY.

    10/16/18 Hubby was Diagnosed with Epitheloid Angiosarcoma High Grade, and was doing so badly that Hospice referral was made. .

    2016 My Husband DX with Stage 1 NSCLC not documented. They used Stereotactic Body Therapy (SBRT) radiation x 5 treatments. 8/24/18 Now has suspected lung Ca metastasis with Large 4+cm masses noted on each adrenal gland and 1 enlarge lymph node in the lower right lobe of his lung where the original tumor is located, plus scattered glass appearance in that area as well, and 1 enlarged lymph node under his left armpit area.

  6. #36
    Senior User
    Join Date
    Jun 2017
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    104
    I will gladly sit beside you while we wait. My 2 drugs were Ipilimumab (yervoy) which I was only given once at the beginning of the cycle and then also given Nivolumab (opdivo) at the same time and then again every 2 weeks. I can only hope and pray these drugs did some good.
    Your husband (and you) have gone through a lot, it amazes me all the tests they make a person with cancer take and then it seems like there is always one more. I just knew when my cancer reoccured I was in for alot of tests again and in your husbands case, because he is so sick and weak, it must be really hard.
    Let's hope there will be a definite diagnosis with your husband quick. It is good that your are nurse, probably easier to understand a lot of test results, treatments. When I go to my doctor's appt. in a week and a half I plan on getting answers, in fact I'm asking ahead of time if I can have a written report.
    Don't you think I should have a written report of my diagnosis and treatment plan and prognosis?
    Let's hope for a good week.
    Linda

  7. #37
    Hello Linda.
    Thanks for the drug info. I too am praying for you to receive good news as well. I absolutely think you should be given a written report of all those things, and most of the time it is as easy as them pressing the Print button on their computer to get it for you.

    We have an online site here that puts everything (except like office notes and stuff like that) in it. It puts all test results, labs, x rays, Ct scans, Pet scans, surgery info-(what meds were used during surgery, etc.) in it where all the patient has to do is log into the account they set up and have access to all of that. You might want to see if you all have that where you're at because most places do have it now. As soon as any new report is put into ours I receive an email telling me there are new test results, etc. available.

    It is a very convenient thing to use. Most of the time I've already seen the test results before we ever walk into the doctor's office. One of the things I like the best about it is it helps you prepare any questions etc. that you have before your appt so when you get there and you're already overwhelmed, or anxious about what they might have found etc. (you will already know what they found), and you won't then at that time have to try to think of any questions you have right there on the spot, or possibly not know what to ask without looking things up beforehand etc.

    Having a medical background does help on some things like labs results, and what a particular diagnoses is, or x-ray findings, etc., but not having ever been specifically a cancer nurse, most of all the cancer and Sarcoma info, the meds they use, specific treatments etc. me and hubby both are learning all that as we go. I do like to read and research a lot which helps along the way too, and if I don't understand something I try to go in search of the answers. But I think it's always very different and more difficult when you are on the inside looking out, then when you are the outside looking in because you have the personal aspect of (either yourself or a loved one who is involved) that is mixed in there too, and that doesn't always allow you to see or immediately comprehend what is often right in front of you, and because of that added stress factor it makes it more difficult to have that split second type of thinking that you have when out in the field working with strangers. (If that makes any sense).

    I do have a little exciting news today though, and that is that hubby has gain 1 pound 4 ounces of weight since his surgery Friday instead of losing anymore, so yelp, we'll take that. Any step in the right direction, regardless of how small it is, is a blessing right now.

    Please keep me posted on what you find out hun, and I will do the same. Hugs to you dear friend. You are in my Prayers.
    10/24/18 10:30 AM The love of my life passed away Today, and Life will never be the same again. RIP MY LOVE. I LOVE YOU FOREVER,, and MISS YOU SOOO MUCH ALREADY.

    10/16/18 Hubby was Diagnosed with Epitheloid Angiosarcoma High Grade, and was doing so badly that Hospice referral was made. .

    2016 My Husband DX with Stage 1 NSCLC not documented. They used Stereotactic Body Therapy (SBRT) radiation x 5 treatments. 8/24/18 Now has suspected lung Ca metastasis with Large 4+cm masses noted on each adrenal gland and 1 enlarge lymph node in the lower right lobe of his lung where the original tumor is located, plus scattered glass appearance in that area as well, and 1 enlarged lymph node under his left armpit area.

  8. #38
    Senior User
    Join Date
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    104
    It is good that your husband is gaining weight, even a little is good and I consider his weight gain a step in the right direction Let's hope each day he gains a little more.
    Yesterday, I was messing around here trying to change my profile/ signature on this site and I really messed up some setting so if I send/write something and it doesn't make any sense it's because of whatever settings I messed up. Next thing that will happen will probably be I'll get locked out of this site!
    My cancercenter/ hospital has a site like you mentioned where a person can see most test results but not all of them. Nothing from my doctor's though which is what I want, their interputation of those results and recommendations. I want this written. Last visit with the bad news the doctor gave me all the questions I had planned to ask, let's say went out thé window. It would be nice to know exactly what kind of lung cancer I have and why these drugs were chosen for treatment . I understand English but I don't understand medical or scientific terminology too well and that's where there are misunderstandings.
    Hope things are going well during this waiting period.
    Linda
    1/17 Chest Xray. Mass found LUL and nodule in RUL
    2/17 PET scan, no evidence of cancer anywhere else.
    3/2/17 LUL lung biopsy
    3/7/17 DX NSCLC LUL
    3/7/17 LUL lung collapsed, hospitalized 5 weeks due to lung not staying inflated and lung infection.
    6/17 PET scan. No evidence of cancer in other parts of body. RUL nodule was never dx as lung cancer.
    7/17 Radiation started on LUL and RUL. 5 high dose radiation treatments every other day.
    10/17 CT scan . LUL tumor has shrank as has RUL nodule. All good!
    2/18 CT scan LUL tumor and RUL nodule continue to shrink. New small spot on left lung. Oncologist recomends wait 3 months and get PET/CT.
    6/14/18 PET. 3 new "spots" show up, 2 LUL, 1 URL. No evidence of cancer in other parts of body.I
    7/17 Lung biopsy. Cancer found LUL
    8/17 PET and brain MRI. Cancer nowhere else.
    9/5 Opdivo and Ipilimumab started.

  9. #39
    Hi Linda We are still waiting and just taking one day at a time here, hubby throwing up again so that weight he gained is probably gone now. How about yourself, how are you doing hun?

    It looks like your signature info is showing up fine, and everything else seems to be coming through fine so the setting you hit that you thought you messed up wasn't too big of an issue. Hopefully you won't get locked out, but if I don't see ya venturing around for a bit I'll send out the National Guard to come find you and help get your account unlocked again. LOL.

    Perhaps write down all your questions that you have beforehand so you don't forget to ask them while talking with the doctor, and don't let them rush you out the door until you get the answers. I know when you're stressed, and trying to understand what they are saying, it's really difficult to try to remember the questions you have and writing them down helps prevent you from forgetting them.

    If the doc is using terminology that you don't understand ask them to clarify what that is for you or write the word down when it is said and then look it up when you get back home. If you still have questions about it after looking it up then add those additional questions to your list to ask about when you go to your next appt.

    I use an excellent Free App on my phone called ColorNotes that I just love, and recommend to everybody. (You can download it for free in your phone from the App Store). You can make checklists, or text lists I like the checklists myself I have a different Color List for each thing: I have a different checklist for My doctor's one for His doctor's 1 for the Grocery, The Vet, etc. just whatever you want to make one for.

    You put in each item or Question separately and then when your done getting that item at the store, or asking that question at the doctor etc. just touch that item on your screen and it marks it off, then just go to the next one on the list. It is great for the Grocery especially because next time you are headed to the grocery, etc and say you need milk, eggs, etc. again just touch those marked off items on your screen, and it unchecks them so they are ready to go again. Just be careful on the righthand side not to hit the X or it will delete the item or the entire checklist LOL don't ask me how I know this. You can also move the items up or down on the list to help keep the most important items on the top and least important ones at the bottom etc. If my questions on the list are really wordy etc. I like to put in the word SKIP (or whatever short word you want to use)between each one of them to help separate them better, so they don't all appear to run together. Anyway check it out it's an awesome free app that has made my life easier. Have a nice day dear. Prayers that all goes well for you hun. Keep me posted and I'll talk with you soon.
    10/24/18 10:30 AM The love of my life passed away Today, and Life will never be the same again. RIP MY LOVE. I LOVE YOU FOREVER,, and MISS YOU SOOO MUCH ALREADY.

    10/16/18 Hubby was Diagnosed with Epitheloid Angiosarcoma High Grade, and was doing so badly that Hospice referral was made. .

    2016 My Husband DX with Stage 1 NSCLC not documented. They used Stereotactic Body Therapy (SBRT) radiation x 5 treatments. 8/24/18 Now has suspected lung Ca metastasis with Large 4+cm masses noted on each adrenal gland and 1 enlarge lymph node in the lower right lobe of his lung where the original tumor is located, plus scattered glass appearance in that area as well, and 1 enlarged lymph node under his left armpit area.

  10. #40
    Senior User
    Join Date
    Jun 2017
    Posts
    104
    Hope you and your husband are hanging in there. I suppose no new news yet, maybe at the beginning of this week? I wlil check out color notes app, it sounds useful. Truthfully, I do not use technology too much, one of my kids has to help me if it gets too complicated.
    Do you live in USA? Is your cancer center far from where you live? I had nothing better to do laying there one day while takingm'y PET scan last week so tried to count .how many visits I have made to my cancer center since I got cancer. I came up with 50 !!!!!!! My husband has driven me to every one, he will not let anyone else even if my (grown) kids come with us. We live about an hour away.
    My doctor's visit is this week so I emailed her a list of questions to answer at that visit and I also told her I would like a written report also of her diagnosis and treatment plan so I feel better about this upcoming visit already.
    Let me know how you and your husband are doing.
    Thinking of you and waiting with you.
    Linda
    1/17 Chest Xray. Mass found LUL and nodule in RUL
    2/17 PET scan, no evidence of cancer anywhere else.
    3/2/17 LUL lung biopsy
    3/7/17 DX NSCLC LUL
    3/7/17 LUL lung collapsed, hospitalized 5 weeks due to lung not staying inflated and lung infection.
    6/17 PET scan. No evidence of cancer in other parts of body. RUL nodule was never dx as lung cancer.
    7/17 Radiation started on LUL and RUL. 5 high dose radiation treatments every other day.
    10/17 CT scan . LUL tumor has shrank as has RUL nodule. All good!
    2/18 CT scan LUL tumor and RUL nodule continue to shrink. New small spot on left lung. Oncologist recomends wait 3 months and get PET/CT.
    6/14/18 PET. 3 new "spots" show up, 2 LUL, 1 URL. No evidence of cancer in other parts of body.I
    7/17 Lung biopsy. Cancer found LUL
    8/17 PET and brain MRI. Cancer nowhere else.
    9/5 Opdivo and Ipilimumab started.

 

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