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Metastasis and pain

Metastasis and pain

Posted by Goldfinch on Jul 30, 2020 10:19 am

At the end of April I had an open left radical nephrectomy. The cancer had already metastasized to the liver and lungs before the surgery. (Diagnosed with a rare kidney cancer in the middle of May.) I have since recovered from surgery and all seems to be going well in that respect except that about 6 weeks ago my flank started to hurt again and this week, my left shoulder.  Hurts the most when I breathe too deeply and abruptly.  My left shoulder was incredibly painful just after the nephrectomy and that was from referred pain from the diaphragm- which was irritated with all the shifting around to remove the kidney and surrounding lymph nodes.  Now, the latest CT scan does not show any lesions or swollen lymph nodes in the area.  I just started Nivolumab but the pain has been building over weeks.  Are lung mets likely the reason?  How best to treat the pain associated with this?

Thanks

Re: Metastasis and pain

Posted by Smalls555 on Jul 31, 2020 12:28 pm

I have a similar case to you. My kidney cancer metastasized to my lungs and skull, then my pelvic bone and my perotid gland. I did also have shoulder pain after surgery but it eventually went away on its own. I was noticing some lung discomfort before my treatments started to work.   Pelvic bone and skull, I definitely felt increasing pain until the growths were found. Doctor's prescribed pain meds as needed. Definitely talk to the doctor, and be persistent if you have a gut feeling! (My doctor's didn't take my pelvic pain seriously until I came in barely able to walk.)
I'm now down to only using Tylenol for pain and things are looking up so I hope the same for you! 

Re: Metastasis and pain

Posted by Goldfinch on Jul 31, 2020 11:06 pm

That sounds wonderful - Tylenol for pain management!  What treatment were you on?  How long before you were able to get off the pain meds?

Re: Metastasis and pain

Posted by Lyne on Aug 1, 2020 11:36 am

Goldfinch‍ 
Sorry to meet you here, but it is a good place to get answers and support.
You mentioned mets to your lungs, and now shortness of breath and pain in the area.  I wonder if you have mentioned this to your doctor as perhaps he could order an ultrasound just to see if there is fluid on/around said lungs?  Just a thought. 

Re: Metastasis and pain

Posted by Goldfinch on Aug 1, 2020 12:44 pm

The idea of getting an ultrasound was brought up by my palliative care nurse and I did go to emergency yesterday evening about this.  Couldn’t hang around long enough to see the doctor - too tired and uncomfortable.  If there were problems with my blood work or heart tracing, I am sure someone would get back to me.  The pain is spreading but it is not as acute as before.  I will be at the hospital on Tuesday and can talk to someone then.   

Re: Metastasis and pain

Posted by Smalls555 on Aug 1, 2020 2:00 pm

Hi Goldfinch,
I'm doing Nivolumab and Ipilimumab immunotherapy every 3 weeks, and I've done a round of radiation on my skull and a round of radiation on my pelvis. I had a few complications, but for the most part I've been lucky with minor side effects only. It sounds like you've been struggling and I sincerely hope your doctor's can help you when you see them next. I've found that I really have to push to get them to do tests though. 
All the best ❤️
 

Re: Metastasis and pain

Posted by Goldfinch on Aug 6, 2020 2:45 pm

So my mouth is bothering me now - burning sensation, inside cheeks are sore.  I heard mention of this pink mouthwash that is the best.  Is that Lidocaine?
 

Re: Metastasis and pain

Posted by Boby1511 on Aug 8, 2020 12:37 am

Goldfinch‍ 

they gave me “pink lady” mouthwash by prescription. It has a numbing property and some sort of med to aid healing. It’s $65 a bottle but my insurance covered it. During chemo I think drugs still covered by Ontario drug ... but this might have been because I had an overnight hospitalization. I didn’t use it so far. My mouth started feeling better second week just using salt and baking soda rinse. I got the pink lady as just in case. I like knowing it’s there in case month gets bad again.
hope this message finds u well.

Re: Metastasis and pain

Posted by Boby1511 on Aug 8, 2020 1:15 am

Goldfinch‍ 
Doc also mentioned that I could get refills if needed so use if needed. Just wait to eat as it numbs the mouth and throat if gurgling. I think there are versions of mixtures. Ask any of your doctors/nurse practitioners. They never seem to say no to prescribing. I have my own pharmacy lol. I have a lot of pain meds steroids anti nausea and the mouthwash but I wasn’t taking all as prescribed as I try to limit the pills but I keep them for the just in case and bad pain days.
mel

Re: Metastasis and pain

Posted by Boby1511 on Aug 8, 2020 1:27 am

Goldfinch

do they not give you a “fever card” where you live?
i got one for emergency visits. Gets me triaged as an emergency and they isolated me in a private room while waiting. I seen the doc quickly at first and they did the usual blood work. Course after the initial prompt service I waited hours for the doc to come back. She had to consult the on cal oncologist which took time and they wound up keeping me overnight as hemoglobin low and I’m on a blood thinner.  Maybe it’s an Ontario thing? I cried when I first got the fever card as I knew the implications right away. But at least no waiting next to other sick people and blood right away.