The gift and curse of NED

[Suzanna]

Hey fellow caregivers! I had a moment last night that I think you all are uniquely positioned to understand. Adam's journey began with a stage IV diagnosis Sept. 2 and by early January his post-treatment scans showed NED. What an incredible gift! Last night he shared with me that he's having some dull pain again near his rib cage that he can feel both in the front and back. I'm acutely aware that NED does not mean that he is cured or that cancer is out of our lives forever, but I was surprised by my reaction to this news. Fortunately, his next scans are on Tuesday of next week, so we don't have to wait long to see if there is already a recurrence. I'm also realizing that the curse of NED is letting your guard down, which I think I've done for the past several weeks. Granted, this could be something completely different and unrelated. He said it is a dull pain and not at all as severe as the pain that led him to the doctor when he was diagnosed. He is on Keytruda for the next two years, every three weeks, and I am confident that if another tumor has appeared, we are in good hands for treatment. I'm not seeking anything specific with this post, just needed to vent to a group who understands. Hope you are all well. 

[LexieCat]

Hey there,

Yeah, I've been dealing with some pain, myself, recently--some pretty severe hip pain, for which I went to my primary care physician. She ordered an MRI, which showed arthritis and nothing more ominous. In fact, it showed that the one bone met I had--on my sacrum--was "almost completely resolved."

I had a feeling this was either arthritis or an effect of the Zometa--a drug that I get for bone mets--but I was certainly aware that it was possible the pain represented some kind of progression of the cancer. I was VERY relieved it wasn't that (seeing a hip specialist later this week).

Between the stuff the treatment does to me, and the effects of plain ol' aging, seems like there are a lot of sources of aches/pains. Hopefully the scans next week will put your mind at ease.

[Judy M2]

Sure hope this is something minor and not a recurrence. Please let us know when he gets his scan results. The waiting is the worst. Fingers crossed. 

[Suzanna]

53 minutes ago, LexieCat said:

Hey there,

Yeah, I've been dealing with some pain, myself, recently--some pretty severe hip pain, for which I went to my primary care physician. She ordered an MRI, which showed arthritis and nothing more ominous. In fact, it showed that the one bone met I had--on my sacrum--was "almost completely resolved."

I had a feeling this was either arthritis or an effect of the Zometa--a drug that I get for bone mets--but I was certainly aware that it was possible the pain represented some kind of progression of the cancer. I was VERY relieved it wasn't that (seeing a hip specialist later this week).

Between the stuff the treatment does to me, and the effects of plain ol' aging, seems like there are a lot of sources of aches/pains. Hopefully the scans next week will put your mind at ease.

LexieCat,

I have played over in my mind every physical activity he's done from bringing in wood to shoveling snow. I am very glad to hear your aches and pains were just those and nothing more!

[Suzanna]

53 minutes ago, Judy M2 said:

Sure hope this is something minor and not a recurrence. Please let us know when he gets his scan results. The waiting is the worst. Fingers crossed. 

Thank you Judy! I appreciate the support!

[TJM]

Suzanna 

What a wonderful turn of phrase. "The curse of NED".  Add in the scanziety and I know exactly how you feel. I've got three months to try to train my body to not freak as the next scan gets close. Funny how many small things that I would never have worried about before caused me to worry about a recurrence as my scan approached.

Cancer, even when NED, just sucks.

Peace

Tom

[Suzanna]

4 hours ago, TJM said:

Suzanna 

What a wonderful turn of phrase. "The curse of NED".  Add in the scanziety and I know exactly how you feel. I've got three months to try to train my body to not freak as the next scan gets close. Funny how many small things that I would never have worried about before caused me to worry about a recurrence as my scan approached.

Cancer, even when NED, just sucks.

Peace

Tom

If it feels this way for me as a caregiver, my heart just aches for the patients and survivors like you and my husband. Wishing continued good news and good scans for you!

[LouT]

Suzanna,

Yes, the "ups and downs" of NED can be a real cause of nervousness, but NED's are still worth it.  I hope the pain is not cancer-related and that you have your answers soon.  For my part, this great group has taught me to live me life fully every day and I try to do that with passion.  I Adam and you will do the same.  

Lou

[Judy M2]

@Suzanna, I think the worry is almost worse for the caregiver/loved one. Hang in there. Thinking of you. 

[Suzanna]

8 hours ago, LouT said:

Suzanna,

Yes, the "ups and downs" of NED can be a real cause of nervousness, but NED's are still worth it.  I hope the pain is not cancer-related and that you have your answers soon.  For my part, this great group has taught me to live me life fully every day and I try to do that with passion.  I Adam and you will do the same.  

Lou

Thanks, Lou. I think you are absolutely right about the benefits of this group! Take care!

[Tom Galli]

Susana,

As my scan date loomed on the calendar, the Grim Reaper would dance on my computer, and the Sword of Damocles hung by a cat hair over my head. I felt all kinds of pain everywhere. I had bad dreams awakened once by my wife for screaming "don't let them cut off my fingers and toes; the tumor is in my lung!" There is this feeling of doom and gloom that I call scanziety and it has all kinds of manifestations.

I had 5 recurrences after NED pronouncements and was crushed by bad news, but I'm still here.  If I can live, so can Adam. I'm looking forward to Adam's next NED pronouncement.

Stay the course.

Tom

[Suzanna]

On 3/18/2021 at 7:23 PM, Tom Galli said:

Susana,

As my scan date loomed on the calendar, the Grim Reaper would dance on my computer, and the Sword of Damocles hung by a cat hair over my head. I felt all kinds of pain everywhere. I had bad dreams awakened once by my wife for screaming "don't let them cut off my fingers and toes; the tumor is in my lung!" There is this feeling of doom and gloom that I call scanziety and it has all kinds of manifestations.

I had 5 recurrences after NED pronouncements and was crushed by bad news, but I'm still here.  If I can live, so can Adam. I'm looking forward to Adam's next NED pronouncement.

Stay the course.

Tom

Thanks, Tom! Always appreciate your insights. I purchased Scanziety and have it on my Kindle. Now would be a great time to start reading it, because this will definitely be our life for (hopefully) many years!

[Suzanna]

Good news! Yesterday's scan revealed no nodules, masses or pleural effusions! He did have some groundglass opacity which we are sorting through, but the team assures us this is not related to cancer and often presents with any number of respiratory ailments. He just had his first dose of vaccine, so I'm wondering if that has any impact. I appreciate you all reassuring me (time and time again, and many more to come...) that I am not overreacting here. 

[LexieCat]

Well, I'm not sure they can say for sure that the GGO isn't related to cancer--I had cloudy areas before it became more defined and resulted in my second cancer diagnosis. It certainly CAN be something other than cancer. I'm just saying they will want to keep an eye on it. But the terrific response otherwise suggests that if it IS cancer-related, the treatment should work on it, too. 

I don't think the vaccine would affect anything in the scan, other than the possibility of enlarged lymph nodes (noted in a recent article I posted about). Not that the enlarged nodes had anything to do with the cancer, just that they could be misinterpreted if they showed up on a scan.

I think you guys can celebrate--sounds like he's doing great!

[TJM]

1 hour ago, Suzanna said:

Good news! Yesterday's scan revealed no nodules, masses or pleural effusions! He did have some groundglass opacity which we are sorting through, but the team assures us this is not related to cancer and often presents with any number of respiratory ailments. He just had his first dose of vaccine, so I'm wondering if that has any impact. I appreciate you all reassuring me (time and time again, and many more to come...) that I am not overreacting here. 

Exceptional!

[Steff]

Suzanna,

I am happy to hear that your husband's scan showed no new nodules!  My mom recently showed GGO in her lung scans and it was attributed to pneumonia.  Her docs reassured us that it was likely not related to her lung cancer or leukemia, but they performed a follow up lung scan just to be safe. And it showed that it has nearly all resolved.  If a follow up scan has not been recommended in a few weeks or a month, I would bring it up to his team, just to be sure it is resolving on it's own.

I missed your original post regarding you as a caregiver allowing your guard down when your husband was declared NED.  I have been caregiving for my mom, off and on, for the past 5.5 years.  Her bouts of lung cancer (original diagnosis and 1 recurrence) required me to mainly advocate rather than give her fulltime care.  But since her leukemia diagnosis in September, I spent a full 6 months of caring for her.  I moved in with her and we spent about 3 months in the hospital.  While I thought I was exhausted during my mom's lung cancer, I unfortunately found that I did not know what exhaustion was until my mom's leukemia.  Spending all day either in the hospital or caring for her at home, as well as, working full time in a very stressful job during COVID times seemed un-survivable at times.  I now know what exhaustion is!  I am not sharing this for your pity or to try and compare my situation to yours...my point is that you HAVE to let your guard down sometimes.  Celebrating NED and beginning to move onto the next phase in life is a part of the roller coaster.  You NEED to give your brain an emotional break from cancer by letting your guard down.  Letting your guard down does not mean that you won't be prepared if your husband has a recurrence or if there are severe side effects from his ongoing treatment.  In fact, I have found the opposite to be true.  The times that I let my guard down enabled my brain and body to be ready for the next fight, whatever that may be.  We must allow ourselves to rejuvenate.  

Now, I stay away from telling caregivers to take care of themselves...you need to do what you need to do.  But allowing yourself to LIVE and enjoy LIFE with your husband still allows you to do your caregiving duties, but also allows your mind and body to rejuvenate.   So, if I could give you 1 piece of advice it is this - let your guard down! LIVE! LOVE! HAVE FUN!

Take Care,

Steff

[Suzanna]

On 3/24/2021 at 1:12 PM, Steff said:

Suzanna,

I am happy to hear that your husband's scan showed no new nodules!  My mom recently showed GGO in her lung scans and it was attributed to pneumonia.  Her docs reassured us that it was likely not related to her lung cancer or leukemia, but they performed a follow up lung scan just to be safe. And it showed that it has nearly all resolved.  If a follow up scan has not been recommended in a few weeks or a month, I would bring it up to his team, just to be sure it is resolving on it's own.

I missed your original post regarding you as a caregiver allowing your guard down when your husband was declared NED.  I have been caregiving for my mom, off and on, for the past 5.5 years.  Her bouts of lung cancer (original diagnosis and 1 recurrence) required me to mainly advocate rather than give her fulltime care.  But since her leukemia diagnosis in September, I spent a full 6 months of caring for her.  I moved in with her and we spent about 3 months in the hospital.  While I thought I was exhausted during my mom's lung cancer, I unfortunately found that I did not know what exhaustion was until my mom's leukemia.  Spending all day either in the hospital or caring for her at home, as well as, working full time in a very stressful job during COVID times seemed un-survivable at times.  I now know what exhaustion is!  I am not sharing this for your pity or to try and compare my situation to yours...my point is that you HAVE to let your guard down sometimes.  Celebrating NED and beginning to move onto the next phase in life is a part of the roller coaster.  You NEED to give your brain an emotional break from cancer by letting your guard down.  Letting your guard down does not mean that you won't be prepared if your husband has a recurrence or if there are severe side effects from his ongoing treatment.  In fact, I have found the opposite to be true.  The times that I let my guard down enabled my brain and body to be ready for the next fight, whatever that may be.  We must allow ourselves to rejuvenate.  

Now, I stay away from telling caregivers to take care of themselves...you need to do what you need to do.  But allowing yourself to LIVE and enjoy LIFE with your husband still allows you to do your caregiving duties, but also allows your mind and body to rejuvenate.   So, if I could give you 1 piece of advice it is this - let your guard down! LIVE! LOVE! HAVE FUN!

Take Care,

Steff

Thank you so much for this!!! These kinds of discussions are exactly why this forum is so valuable. I appreciate your advice more than you know! 

[LouT]

Great news...you'll get the lowdown on the GGO, but for now take a deep breath and just relax with all of the good news you've received.  It certainly is encouraging to hear.

Lou