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Dad’s pain


Jowjow99

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JowJow,

Im unable to speak much to gabbapentin and feet swelling. I do know that it works well for my mom, better if keeps it in her system by taking it regularly. My mom takes 900mg and takes them at night otherwise she sleeps all day. She also takes tramadol, which I believe is more of a muscle relaxer than pain reliever, but it helps with her chronic back pain (not cancer related). She's not had issues with her feet swelling except when she was in the hospital and just lying in the hospital bed. Once she got home, it took several days for her feet to get back to normal.

What I can speak better to is chemo/keytruda.  My mom completed 6 sessions of carbo/alimpta and keytruda and has had another 2 sessions of just keytruda since. My mom is in the current phase of "the area where her cancer is looks worse/looks like it's growing. Her doc explained that keytruda causes swelling. Often times, this swelling is what causes the scans to look bad. So when people talk about keytruda causing cancer to get worse, they usually are referring to the scans looking bad, not that the cancer has gotten worse. The "growth" can be attributed to many things - swelling, pseudo-progression, etc. It can also be due to cancer growth, which is why my mom had several places in the area of "new growth". All 5 biopsies came back negative, so we are hopeful that it is just swelling and scar tissue. 

Keytruda is said to be effective for about 28 days. The fact that your dad has treatment delays is not a huge deal for keytruda effectiveness.  And the reality is that it is quite common to have treatment delays for a variety of reasons. As far as the delay in chemo, I don't know the effects, if any, it would have. The important thing is that he is back on a treatment schedule. Missing 3 weeks is not going to cause him to "start over" in the effectiveness of treatment. And it may have been a small break his body needed to recover and get back on track.

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Tramadol is actually an opiod pain medication, not as strong as morphine. It can have some interactions with  a lot of other meds, includiing many antidepressants. This doesn't mean that tramadol can't be taken with some of those meds, but the prescirber needs to know what else the person is taking and may need to adjust dosage.

This pain relief stuff is really complicated.  Wish there was something that would work for everybody and not have side effects.

Bridget O

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Jowjow,

I can’t give an opinion on pain meds but I do not believe a 3 week delay in a chemo session negates anything. In the course of my 18 infusions, I had many that were delayed. Reasons included blood counts too low or illness. So don’t worry about a chemo delay. 

Keytruda, an immunotherapy drug, does not make the chemo worse before better. Some in process scans show a growth in tumor size but that growth could be scar tissue or inflammation or in fact tumor growth. It takes a while for the immune system to start the attack. I don’t believe a short delay in Keytruda is cause for alarm. But, because immunotherapy is new treatment, you should rely on a physician’s answer. 

Stay the course. 

Tom

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“Stay the course” has got to be the best phrase out there!!  Thank you Tom, Steff and Bridget!

Although I still believe it’s the Gabapentin causing the swelling, I’m a little nervous it could be a kidney issue (?). My dad had his blood drawn when he saw the interim onc on Thursday but won’t know the results until he sees his onc on Tuesday. Just so worried about him!!  On top of all this, I’ve been under the weather so I haven’t been able to go see my dad.  I can only call/text/FaceTime my parents every other hour 😕

I feel like I’m in a video game: fighting off everything that’s coming to attack me one at a time.  Or patching up one hole in a boat, only to find another one leaking 😔

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My dad was finally able to see his oncologist today after slowly weaning off Gabapentin this past week.  Weaning off this medication has been horrible to say the least!  First and foremost, the pain has been intolerable.  Second, he has been on Furosamide to help with the water retention (his legs and feet are looking much better now).  Third, he's been having some withdrawal side effects (sweating, irritability) but I think his new medications will help.  

Oncologist prescribed the Fentanyl patch as well as morphine (if needed).  He goes in for his 3rd round of treatment tomorrow.  Two weeks later, he will get a PET scan and a chest CT to see how things are.  I pray that this next treatment will help!!

Ffpacker:  I've read up on Fentanyl patches.  Any special suggestions or comments you can share with me?

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After each treatment, my dad seems to feel severe inflammation, I assume, from keytruda. Anyone else have this side effect?  It causes him extreme pain on top of his existing chronic pain from the tumors on his pleura. 

We put a Fentanyl patch on him yesterday. Not sure if it’s helping. He is struggling with major constipation all week (normal side effect, I know). Last night, he wasn’t able to sleep and is having stomach pain. Maybe from the patch? 

We go back to the onc for a follow-up today.  Will see what the onc has to say...

 

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JowJow,

Is your dad taking a steroid?  If some of your dad's pain is due to inflammation, it's definitely worth talking to the doc about considering use of steroids, if he's not on one already.  Keytruda does in fact cause swelling and inflammation.  Although we were told that high dose steroids for long periods of time are not good for Keytruda effectiveness, low dose (I'm not sure what is considered to be low dose) is okay.  And if he is already on a low dose, perhaps the dose needs to be increased for a short period of time to see if it helps.

Luckily, my mom has not had severe inflammation yet.  We anticipate it will come at some point because she has RA, but since she was receiving chemo and Keytruda, we are assuming the chemo has helped keep her RA in check (it has in the past).  Inflammation was seen on her last CT around the area of her tumor (on the back of her trachea).  Biopsies did not show cancer, but CT shows a "thickening" in the area of her cancer.  Initial discussion is that her doc may recommend low dose steroids to help with the inflammation, but nothing has been prescribed as of today.

It is also said that foods high in lycopene (tomatoes) can help with inflammation, as well as, tumeric.  I'm not very well educated around natural remedies, nor do I know of their true effectiveness, but it may be worth looking into.  Obviously if you decide to try a "natural" supplement, you will want to bring it up with his docs to make sure it will not negatively effect any of the cancer or it's treatments.

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Jowjow,

I can't remember whether your dad has seen a palliative care doctor to help with side effects and quality of life. If not, this might help. An issue with natural remedies is that there are a lot of different untested opinions. As Steff wrote, some say that foods high in lycopene, such as tomatoes, can help with inflammation. Others say that tomatoes and other nightshade vegs (peppers, potatoes, eggplant) cause inflammation. I find that if I eat a whole lot of tomatoes, my knees hurt from arthritis. The other vegs don't seem to bother my knees. I suspect that it's highly individual.  I wish all this (both convetional and natural remedies) weren't so complicated. Sometimes I just want yes/no answers!  

Hang in there.

Bridget O

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My dad takes dexamethasone for 3 days starting 1 day before treatment but not any more than that. 

I suppose we won’t know whether it’s inflammation or disease until his PET/Ct scan next week. 

We have any appointment with a palliative doctor tomorrow! :)

Hoping he can stay strong and fight through this!

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On 1/2/2018 at 8:31 PM, Jowjow99 said:

My dad was finally able to see his oncologist today after slowly weaning off Gabapentin this past week.  Weaning off this medication has been horrible to say the least!  First and foremost, the pain has been intolerable.  Second, he has been on Furosamide to help with the water retention (his legs and feet are looking much better now).  Third, he's been having some withdrawal side effects (sweating, irritability) but I think his new medications will help.  

Oncologist prescribed the Fentanyl patch as well as morphine (if needed).  He goes in for his 3rd round of treatment tomorrow.  Two weeks later, he will get a PET scan and a chest CT to see how things are.  I pray that this next treatment will help!!

Ffpacker:  I've read up on Fentanyl patches.  Any special suggestions or comments you can share with me?

The Fentanyl patches come in various strengths. Start with the lowest and see if it works. Mine were 72 hr patches that wore off at about a little over 48. My doctor kept my dose the same but changed my frequency from 72 to 48 patch change intervals. That seems to be working for now. The next step would be to increase the dosage.

i does work, but Fentanyl can be dangerous if abused. Follow instructions and don’t make any changes without talking to the doctor.

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We went to see a palliative care team last week and they are helping my dad adjust his pain medication to a more tolerable level. We will see how it goes in the next couple of weeks. 

They gave him Lyrica to try but just like the Gabapentin—swelling in the feet. 

Pet/Ct scan today. Will review results with oncologist tomorrow. Praying for good news!

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Hi, Jowjow,

Thinking of you and your dad and hoping for good scan results! Please post an update when you can.

With gratitude,

Lauren
--
Digital Community Manager
LUNGevity Foundation

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Update on my dad:

PET/Ct scan showed disease progression and suspicious activity in the brain. Brain MRI revealed one small met. CyberKnife scheduled for this coming Friday. 

Second line treatment one week after CyberKnife procedure. 

Pain is being managed pretty well after meeting with palliative care doctors.  Will continue to work with them. 

Challenging for sure but spirits are high and he is fighting strong!! 

(We also met with another onc for any potential clinical trials, but nothing right now that would be suitable for Dad)

 

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Hi Jowjow,

I'm sorry to hear about your dad's  disease progression and brain met, but glad to hea that the palliative care doctors are able to help with the pain.

Hang in there, Jowjow and dad!

Bridget O

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I'll be thinking of you and your dad today! I hope all goes well with the surgery and the second-line treatment. I'm glad to hear that palliative care has been effective at managing your dad's pain. Keep up those high spirits!

We are here for you,

Lauren
--
Digital Community Manager
LUNGevity Foundation

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Dad finished his 3 rounds of radiation for the brain on Wednesday. Main side effect is fatigue. 

He is scheduled to start taxotere/Cyramza Wednesday next week. I’m so worried about the side effects and that the risk may outweigh the potential benefit. 

Can anyone chime in?

He seems to be getting weaker but I’m not sure if it’s from the radiation or from the disease ...

His right arm/hand seems to be getting more and more weak. Again, not sure if it’s from the brain or the lung?

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Good morning, Jowjow,

I'll put out a call for responses/information from members who has experience with this tx.

Lauren
--
Digital Community Manager
LUNGevity Foundation

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