Dad’s pain

[Jowjow99]

Hi everyone,

My Dad was diagnosed with LC about one month ago. He started his first cycle of Keytruda/Alimta/Carboplatin one week ago. 

His initial symptom was pain in his right rib area, and gradually moved to his right back (biopsy location). His pain seems to be getting worse and is affecting his sleep at night.  He can only lay down for about an hour at a time. He’s currently taking Tylenol 3 and it seems to work on/off.  

Anyone experience this?  Any info or suggestions on how to help him rest comfortably?  Laying on his back or stomach doesn’t seem to work. Only left side for a short period is ok. 

What other pain meds might the doctor recommend?  My dad is really hesitant in using so much pain medication but I think he really needs it. Will the chemo/immunotherapy help with this pain at all??  

The cancer has affected the pleural lining and he has some pleural effusion. Oncologist says draining won’t help as it will just come back again. 

Help?

[Karen Markey]

Hi Jowjow99.  My mom has a very similar story.  She also was diagnosed with lung cancer ... in August 2017.  Her cancer has spread to the medistinal lymph nodes and she also has a lot of pain in her back and right rib area.  And, just like your dad, she was never one to "take pills" so she is hesitant to take anything and has much difficulty sleeping.  She paces throughout the night and seems to find minimal relief sitting in an upright rocker with a heating pad.  Needless to say, her nights are very long and she is extra-fatigued during the day.  We also try to assure she gets some exercise during the day (i.e., a walk) to help tire her out. The oncologist prescribed Naproxen for the pain ... one pill in the morning and one at night (which is just a stronger prescription dosage of Alleve). We were hopeful that the Alimta/Carboplatin would help by shrinking the cancer (which we believe is pushing on nerves and organs) but after only one treatment it was stopped as the cancer continued to grow during treatment.  She just began Keytruda about two weeks ago and the pain has worsened.  Doc said this would likely happen as the cancer cells would grow along with the cancer-fighting cells before the cumulative meds could start working. Just yesterday Doc suggested we try 2 extra strength Tylenol with the Naproxen (can be combined since they are different types of meds).  Also prescribed Tramedal (sp??) ... also not a narcotic .... to try if this doesn't work.  Best to you and your dad.  I never imagined being a caregiver could be so heart-wrenching. I cry when I'm alone so mom doesn't lose hope. Please let me know how you dad is doing.

[Jowjow99]

Karen, thanks for your reply. 

Dad’s doctor prescribed Tramadol but it didn’t seem to work for him.  Plus, it made him feel some slight chest discomfort so he discontinued it. 

I really hope that as he chemo/immuno meds kick in, his pain will lessen. 

I’ll keep you posted on my dad. Please do the same with your mom. We need all the help we can get!

[Jowjow99]

My dad had been taking 2 extra strength Tylenol every 12 hours and that did work for a while...  so it may help your mom. 

Question: how soon after 1 round did they do a scan?

[Karen Markey]

Maybe I should clarify, Mom just started taking the 2 extra strength Tylenol WITH the Naproxen today and she's already noticed a difference.  She won't start taking the Tramadol unless this combo stops working, mainly because Doc thinks it may make her drowsy.  The Naproxen doesn't .... except she gets "woozy" if taken without food. She will take this combo in the morning and in the evening (basically every 12 hours as you said).  Mom's chemo was stopped immediately after her first infusion as she developed another enlarged lymph node at the bottom right of her neck.  Doc said it was evident chemo wasn't working as nothing should "grow" during chemo.  Next scan will be after her 3rd Keytruda infusion (2 more to go). Her infusions are 3 weeks apart.

[BridgetO]

Hi Jowjow,

You  and your dad might ask for  a referral to palliative care, if you haven't already. Sometimes people think palliative care is the same thing as hospice, but it's not. It's care that seeks to help with pain and quality of life issues  for a person with a serious illness. Treatment  (like chemo) aimed at curing or controlling the  disease can go on at the same time. Here is a link to the article on palliative care on the Lungevity site: https://www.lungevity.org/for-patients-caregivers/lung-cancer-101/treatment-options/palliative-care.

Hang in there, Jowjow.

Bridget O

[Steff]

Jowjow,

I'm sorry to hear about your dad's pain. My mom had her upper right lobe removed 2 years ago and had experienced some pain in her back - right under her shoulder blade. When she was diagnosed with lung cancer recurrence, the pain had gotten worse and more constant, so she was positive she had a bone met there. She does not. After speaking with her docs, they had a very good explanation for the pain, something about nerve endings, and it's not uncommon to have pain there. Perhaps your dad's biopsy is causing the back pain - it's worth asking. As for Tramadol, my mom has taken this for years for back pain. For it to work properly, you must stay on top of the dose while the pain is happening. The effectiveness increases with a few doses...that's been her experience anyway. My mom refuses to take narcotics and prefers Alleve and Tramadol for her pain control. I see that Bridget suggested palliative care. I agree with her, it may be a good option right now...they can more readily help with pain management. If his current treatment plan is effective, the cancer should shrink. And if that is the source of his pain, it should lessen.

My mom is on the same treatment regimen - typically they will do a scan after the 4 treatment session.  I regularly update my mom's status and treatment side effects in the NSCLC forum. It's titled Finding Hope in my Moms cancer Journey. Maybe what my mom has been through can give you some hope and provide helpful info. My mom will receive her 6th treatment Friday and although the chemo is kicking her butt this time, she is still doing okay.

I am happy you found the Lungevity forums - they have been a big help to me. We are here for you and there are many lung cancer survivors who can hopefully help you cope with the craziness of lung cancer.

Take care, 

Steff

[Jowjow99]

Thank you Karen, Bridget, and Steff!

Perhaps my dad can give Tramadol another try. I think he took 1 pill and just called it quits. We have a follow up appt tomorrow with the onc. I’ll ask him again.  He is really uneasy about taking Tylenol 3 everyday but feels he doesn’t have any other choice...  

Steff: my dad’s front rib pain has been there since day one. His back pain started after his first biopsy. I do think it might have something to do with that, but no one seems to know (?). Would the onc know? We asked the radiologist who performed his second biopsy (for genetic molecular testing) if anything looked off, and he said no. 

[Tom Galli]

Jowjow,

Cancer is such a pain!  From reading your description, your dad is receiving combination chemotherapy (pairing of Altima & Carboplatin with the new immunotherapy drug Keytruda). His symptom is chronic pain and you are wondering if the combination chemo will stop the pain.  The answer is yes but it will take some time for the immunotherapy to produce results.  Here is some relevant information on how immunotherapy works. Select the arrow on Immune Checkpoint Inhibitors and note answers to how does it take to see results and read further down and note a common side-effect of musculoskeletal pain.

I believe you also report a bone biopsy. Did that biopsy indicate his cancer is in the bones of his ribcage?  If so, Bridget's idea of palliative radiation is a good one. So, I'd ask his doctors about the bone biopsy results.

I live with chronic pain and have had years dealing with it.  My unsolved problem is like your dad's -- sleeping.  My doctors and I tried a lot of medications from sleep inducing drugs to narcotic medications and tramadol.  We settled on an antidepressant medication called Xanax (Generic form -- Alprazolam) that I now take nightly about 30 minutes before going to bed.  My initial dose was quite small, .5 mg, but now I take 1 mg and it makes me drowsy enough to sleep.  Sometimes I need to increase the Xanax dose to 1.5 mg.  Sometimes, I need to add tramadol when I experience a spike in pain.  Sometimes I don't sleep. But, this system works for me about 6 nights in 10. 

Your medical oncologist ought to be able to explain the pain as cancer caused or side effect caused or a combination of both.  I'm not sure the interventional radiologist that performed the biopsy would be equipped to answer the pain question.

Stay the course.

Tom

 

[Jowjow99]

Steff: How long did it take for the Tramadol to kick in?  Was it right away?

[Jowjow99]

Thank you Tom!  My dad’s bone scan came back clear so it’s not his bones. 

I think he really wants to get off Tylenol 3. He takes a low dose of Lorazepam at night .5mg to help with sleep. Onc says even 1mg is ok. But he wakes up almost every hour and, of course, at every 6th hour, he needs his pain med again. 

I REALLY hope the treatment will help with his pain sooner than later!!

Whats the Tramadol dosage you are using?  My dad’s onc gave him the lowest dose I believe...

[Steff]

Jowjow,

The last time my mom was in the hospital, she took tramadol and ibuprofen together. For 1 day,  she had to break down and take a couple of doses of narcotics because she allowed her pain to get out of control. Once it was stable, she went back to using tramadol and ibuprofen- the ibuprofen was mainly to get her by until she could take another dose of tramadol. Although I am not a fan of narcotics, sometimes it's the best option for pain, especially if it's short term.

As far as who told her about the pain in her shoulder due to nerve endings, it was both her oncologist and pulmonologist - the oncologist can probably give you better info on pain than the radiologist. 

There are so many ups and downs in the cancer journey, especially in the beginning. My mom has spent more time in the hospital in the last few months than in her entire life altogether. But she is more stable now and doing much better. If your dad's treatment plan is effective, your dad will likely do well too. It's just a tough road until it does begin working. Hang in there!

[Tom Galli]

Jowjow,

My tramodol dosage is 50 mg tablets, take 2 tablets 4 times a day or every 6 hours.

Stay the course.

Tom

[Jowjow99]

Just had my parents over for dinner tonight... and I think I understand what my dad is doing...

Instead of taking his pain meds every 6 hours, he’s trying to push it out as long as he can. Even though there’s pain, I believe he wants to see if the pain has lessened... wants to see if treatment is working. He said, “how will I know if I still have pain if the pain medication is masking it?”

I totally understand where he’s coming from, but I told him that for the time being, he should take his pain meds every 6 hours regardless. Am I right?

[BridgetO]

My spouse had long term pain (sometimes continuous and sometimes off and on) and was told if you're going to take any kind of pain medicinne it's best to take it continually so long as you have the pain, rather than to hold off until it's too bad to stand, because then it will be much harder to manage and may not be controllable at all. I can understand your dad wanting to know if the pain has lessened. However, it sounds like the kind of pain that's going to take some time to lessen with treatment. Maybe youo could negotiate with him a certain number of days or maybe a week to take the meds regularly and be pain free and then  taking a day off to see whether he still has the pain. Just a suggestion.

Bridget O

[Jowjow99]

Thanks for the suggestion Bridget!  I really love this forum and everyone’s help and support!

My Dad had his follow up appt with the onc today after his first round of treatment and the onc put my dad’s mind at ease about taking Tylenol 3. He did recommend my dad to try pushing doses out to every 8 hours. He was able to do so today from 8am-almost 5pm.  Hopefully he can keep it up!

[Jowjow99]

My dad will be going in for cycle 2 of keytruda/carbo/Alimta on Monday. His pain is so hard to understand and he can’t seem to verbalize it very easily either (I️ don’t blame him). Some moments he is ok and others not so much. Last night, he didn’t sleep. At. All. 😔

He’s been pretty fatigued all week and is taking naps during the day (without any pain meds yesterday at all) which might contribute to his lack of sleep at night (?)   

Wish there was something my mom or I could do to help him. We feel so helpless at moments like this ... 

Any comments or experiences would be super appreciated!  If none, that’s ok too. Just felt the need to vent 😕

[Steff]

Jowjow,

I'm sorry to hear that your dad is continuing to have pain. I have zero advice, but just wanted to let you know that you are supported here. 

Take care,

Steff

[Tom Galli]

Jowjow,

When my chronic pain keeps me up at night and I want to fall asleep, I immerse myself in technical reading, the more technical the better.  A couple of nights ago, I waded into the quantum physics rhelm of string theory, for example.  I generally do a wiki-sleep.  I follow links in a wiki article for a deep read.  Sometimes the tedious reading makes me tired enough to ignore the pain.  If not, I learn something.

One thing I don't do is watch TV.  Difficult, boring and tedious reading is far better than TV.

Stay the course.

Tom      

[Jowjow99]

Thanks for your support!

Any thoughts on whether the chemo may be making him more uncomfortable?  From what I’ve read, keytruda causes inflammation which might contribute to more pain?  But he’s already on week 3...shouldn’t side effects be getting better and not worse?  Side effects are different for everyone but just throwing this out there...hoping anyone might chime in. 

[Jowjow99]

I know not everyone is experiencing the constant pain of this disease but I’m wondering if anyone is experiencing pain related to treatment...?

im still trying to help my dad discern between disease pain and treatment pain. Any help would be greatly appreciated!

[Susan Cornett]

I had pain during my second round of chemo.  Taxol caused unbearable joint and muscle pain.  It was bad enough that I called Super Doc to request pain meds.  

[Debra Wiley]

The chemo didn't lessen my pain at all.  I had a lot of side effects, like  Peripheral neuropathy, trouble swallowing and dental problems. My hand and toe nails fell off and I had upper back pain from the pleural infusion.  I'm on Norco 10 that I take 4 times a day and believe we shouldn't suffer if there is pain meds available.  Like my doctor said, the least thing you should be concerned about is getting addicted to pain meds.  I'm dying soon so I want to be as comfortable as possible. If pain meds aren't the solution, perhaps a sleep aid can help or muscle relaxer.

Debra

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[Ffpacker]

I have Bone Mets and have had bad pain in my left side back since about May. After being staged following Liver surgery to remove tumors and get a biopsy on the tumors, they staged me as Stage IV Squamous Cell NSCLC.

In short, they had me on 800 mg Ibuprofen, and Hydrocodone for the back pain. The Hydrocodone lost its effectiveness and they were worried about too much Tylenol so the put me on Oxycodone for the pain. It worked until about 2 weeks ago to relieve my pain.

This week, my doctor put me on Fentanyl patches (12 mcg) and after about a day, I feel so much better pain wise. I can still take the Oxycodone if needed but after about 36 hours, I’ve only needed the Ibuprofen or Tylenol on the interim.

It has allowed me to get a good nights rest. My Keytruda infusions will eventually work to eliminate the pain (I hope). It could also be nerve damage at this point caused by the Bone Mets. It’s too early to tell for sure.

So, these Fentanyl patches are a slow release, constant pain control that is giving me a lot of relief for the time being. I hope it continues to work.

I am not a very addictive type person but I do worry about too much Opioids and becoming reliant on them. I follow the prescription rules to the letter and won’t deviate from my doctor’s instructions.

[Jowjow99]

Update on my dad:

Second week after 2nd chemo treatment, Dad has major pleural effusion that needed to be tapped. Less than a week later, again.  Had talc pleurodesis done shortly thereafter. While in the hospital, he was on oxycodone 10mg and gabbapentin 100mg. When he got home, he felt the gabba wasn’t sufficient so doctor upped it to either 300mg or 600mg if needed. He started 300mg a week ago and upped it to 600mg a couple of days ago. Now his feet are swollen. I’m positive the gabbapentin is the culprit but it seems to help with his unbearable pain (caused by tumors along the linings of the lung). What other pain meds can he use to replace the gabbapentin?  I’ve told him to go down to 300mg but I just know that won’t be sufficient for him. 

His onc is on vacation but my dad will be going to see a stand-in oncologist today. I’ve told him to ask for some water pills and other pain meds. Should he up the oxycodone?  Fentanyl?  

He will start his 3rd round of carbo/Alimta/keytruda on January 3rd. 

Does anyone know if the delay of 3 weeks in the chemo treatment “negates” the previous sessions?  (Does that even make sense?). And I’ve also heard that keytruda will make the cancer “worse before it gets better”. Will it get “worse” again because of the delay?