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Posted

Hi Folks,

Just curious about people's experiences with pain and locations of it...

Husband has 8.5cm tumor wrapped around center airways, had first treatment last Friday...also mets to nodes and kidneys

But all along he has also had severe pain on the right side, kind of mid-torso, had x-ray, shows no broken rib, they thought it might be torn muscle from coughing, started getting better, now worse and docs keep blowing it off saying it's pain from the LC itself...seems strange to me though, the location of it...

 

Posted

I should also say the xray was weeks ago when they determined there was no broken rib...other than the xray, this hasn't been investigated...

 

Posted

Has he had a CT or a pet scan?  Those tests are generally more accurate than xrays for detection of cancer cells.  Are you dealing with his oncologist, PCP, or other doc on the side pain?  Surely one of them can address this with you.  Just keep asking until you get answers.  We have to be our own biggest advocates and sometimes that means asking the same question again and again.  

 

Posted

Just Me,

What Susan said....

Pain is an indication that something is wrong and it is my experience that tumors in the lung and other organs are not painful unless or until lung cancer invades the bones.  So a scan to check for that condition appears to be the best solution.

Stay the course.

Tom

  • 2 weeks later...
Posted

Hi, JustMe,

How is your husband doing? Post an update when you can! And feel free to keep asking questions!

Lauren
--
Digital Community Manager
LUNGevity Foundation

  • 3 weeks later...
Posted

Hi there.

Found out the pain was 2 broken ribs undetected by x-ray.

Had CT scan results today, disappointing.  Main tumor is slightly bigger and new nodes are involved.  Already switching treatment from keytruda/alimta/carboplatin to just taxotere.

Frustrating...because we were just getting started and that treatment combo was supposed to be the best bet...

He had a miserable time after round 2...pneumonia, thrush in his mouth, fevers, low BP, low blood counts of course, back and forth to doctor several times...

Kind of numb today...

 

Posted

JustMe,

Oh the bane of chemo side effects?  I do hope taxotere is better for him.  Is he still taking Keyturda in combination with taxotere?

I glad the cause of bone pain was discovered and happier still that the cause is not cancer related.  

Take some time off to address the numbness.  You'll both need your energy.  Let us know how he progresses with taxotere and don't hesitate to ask further questions.

Stay the course.

Tom 

 

Posted

Hi Tom,

No, the plan is just taxotere, not combined with Keytruda or any other chemo/immunotherapy.

It's a tough decision to switch treatments even for his oncologist who is consulting with another onc at Dana Farber first.  The first scan was May 10th, but treatment didn't start until 6/23, so we wonder if possibly it had grown during that time period and...and also typically immunotherapy takes a bit longer to start working in general than chemo...but on the other hand, the onc is concerned with time...and if it's NOT working, we should get started on something else asap.  These CT results were such a surprise because my husband really felt it was working...

Oncologist has said that it's husbands choice to continue with treatment and says we're not trying for a cure, but a maintenance point...his concern about time scares me, it seems too soon to be saying this stuff... 

It's upsetting that the 'best bet' isn't working and also that he has to start over with treatment and figure out which side effects he'll be hit with.

He's exhausted all the time...and depressed.  It's heartbreaking.   

The main tumor is now 8.6 x 7.3 cm. There's new, higher nodes involved and worsening of the ones already involved.  Kidney masses unchanged.  Pleural and pericardial effusions apparently too.

I'm being as tough as possible and I'm in a massive Mama Bear mode when it comes to him...and we are trying to enjoy the summer and our children, including an 11 year old daughter, as well as grandchildren and family and friends...but when I'm alone, I'm constantly on the verge of tears.  I'm realizing how important my own health has suddenly become...and yet I can't seem to make changes for my own benefit/my daughters benefit at the moment...and then there's our finances with him unable to work very often...

Ugh...I need to put on my positive pants.

 

Posted

JustMe,

My mom is on Keytruda and chemo - is having her 2nd dose Friday. We've heard many times that sometimes with Keytruda, tumors can grow initially but then typically reduce after the 1st scan occurs.  If he's already having a scan (they will not do a scan for my mom until her 4th treatment, so about 12 weeks), perhaps the initial growth is due to natural immunotherapy reaction???  Perhaps the oncologists main concern is not that the main tumor grew, but there is more involvement???? It might be worth asking the oncologist so you fully understand why the quick switch of treatments.

Although my mom is further behind in her treatment than your husband, she is experiencing similar symptoms - extreme fatigue and depression (even tho she says she's not depressed!).  I agree, it's really tough to see, especially when you just "accept" one treatment plan and then they switch it up on you.  I'm so very sorry.   Best wishes

Posted

JustMe,

My PhD in Lung Cancer Surviving (engineer's attempt at light humor) would prescribe patience.  Having said that, I was the most impatient lung cancer patient on record. My long suffering wife not only had to care for me but put up with my angst.  Martha says angst is a synonym for my name!

I know about your depression and breaking heart and as I say often, I wish my magic wand could wave all this away.  I got to the point where my oncologist was attempting to treat my Squamous cell NSCLC as a chronic illness.  He kept feeding me taxol and carboplatin along with the then newly introduced Tarceva and the drugs, save the Tarceva, would knock back the tumors.  But about 6 months after a NED (no evidence of disease scan), the beast would return.  So I'd spend 18 weeks in chemo misery and 24 weeks living.  But that angst thing kept me fretting so much that I forgot the key reason for going through the treatment madness -- extended life.  I was fretting rather than living.

The moment he feels better, even if it is a two or three day window, go take a drive to Mount Washington.  The view from the summit is just the tonic you need -- suspenders for your positive pants.

Stay the course.

Tom

  • 1 month later...
Posted

Haven't had a chance to get to Mount Washington lately Tom...although a good suggestion, haven't been up there in a few years now.

Second try with a different chemo isn't working either...husband is starting radiation to the main tumor next week since that's where most of his symptoms are...although he also has pain in his ribs and recent CT scan suggests bone metastases in ribs...different ribs than the two that broke a few months ago...and have appointment in Boston with a different oncologist...also have blood to drop off at FedEx to send off to CA for another genetic test...

We were really shocked at CT results (again)...tumor that we could feel in collarbone was definitely shrinking, but overall everything else grew...

Hope anyone who reads this is doing okay...it's beautiful in NH today.

:(

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