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Greetings - New to the Group

Amsterdamsel's picture
Amsterdamsel
Posts: 2
Joined: May 2021

Hello, fellow travelers. I am a 58-yr old woman w/ a 59-yr old husband with Stage IV Renal Cell cancer - metastasized to the lungs. I am very grateful to have found you all and I hope to achieve some sense of perspective by reading your experiences and sharing ours, as well.

DH was diagnosed as Stage 3 in August 2020, six months after his urologist had ordered a CT scan that was subsequently misplaced and not read. The world went into quarantine just a couple of weeks after that and my husband wasn't contacted, so he believed no news was good news. The pain that had sent him to the urologist had subsided, somewhat and the world was dealing with the pandemic. Then, last summer, the pain flared up again. When DH went back, the urologist was upset and apologetic - DH's CT scan had fallen through the cracks. The dr. had raised a stink with the hospital muckety-mucks and they were all very sorry. Then, the dr. ordered another CT, the results of which showed a good deal of growth in the mass in his kidney, and oncology was now on board. Several rounds of chemo ensued followed by a few emboli and a kidney/lymph gland resection in December. Because he rebounded so quickly from the surgery we all thought everything was fine and he was on the road to recovery. 

Within 3 weeks DH was unwell, again and subsequent scans/x-rays showed that the cancer had metastasized to his lungs. What has occurred since then are the remaining chemo treatments followed by the initiation of immunotherapy and cough medicines. He has lost more than 40 lbs and has become quite frail. Recently, the pulmonologist prescribed using a nebulizer w/ 2 steroidal meds. His cough is constant and debilitating. His head is in pain - around the temple (especially on one side) and he has chest pain, as well. Of course, the constant fatigue requires a good deal of rest, but I have become afraid that his symptoms show an imminent crisis that we are not recognizing (Heart attack? Emboli? Stroke? Aneurysm?) or that I have lost all perspective, completely. 

Thank you very much for reading the saga of our struggle with cancer. Any observations would be read gratefully. Best regards.

 

tgpath1's picture
tgpath1
Posts: 26
Joined: Apr 2021

I'm sorry that you are both going through this.  I can't offer any insights but will keep you in my prayers that they are able to control and treat this.  If you have not already done so, I would suggest a second opinion on treatments.  If it were me, given the initial "mishap", I would want reassurance that what they are doing is truly the best course of treatment.  Stay strong and keep faith!

a_oaklee
Posts: 567
Joined: Nov 2013

Please sign up for Smart Patients at smartpatients.com

You will get additional help there.  

Im so sorry the two of you had this happen to you.  I have no words.

Im trying to understand getting chemotherapy prior to surgery.  My husband received targeted therapy prior to surgery in 2012, but it is rare to have drugs prior to surgery.  

I hope your husband has had  a thorough and complete workup.  A full body nuclear bone scan.  Head to toe CT scan.  Brain MRI.

Dont be afraid to find out the extent of whats going on.  Its the only way to fight this thing.

Second opinions are also wonderful.

There are also drugs that can help your husband through all these symptoms.  My DH took drugs to give him an appetite,  to help him be awake and not tired, mood, pain etc..   He no longer needs all that help, but it is all about quality of life.  We saw a palliative care specialist in addition to the oncologist.  

Make sure you understand all the treatment options that exist, and not just what is available in your local community.   We learned that the hard way, so im passing it along to you.

Best wishes for you and your husband.

Deanie0916
Posts: 403
Joined: Nov 2016

Are going through this. I agree with the second opinion option and getting full scans to find out if more is going on. My prayers go out to you.

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