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woco

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Well, after studying today, I fear I may be right about this abdominal pain being a Keytruda associated colitis. It is reported to be a side effect in a third of patients. I am going to ask my Onc about holding the infusion Friday unless it resolves. But it has been getting bad again. I am going to ask her about following the Cleveland Clinics  algorhytm which I just downloaded to investigate. I sure hope I don't end up with ulcerative colitis or worse. It can lead to sepsis and death.

Any prayers or thoughts are welcome

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Sorry to hear your having a hard time. That is scary 😟.

Unfortunatly these drugs can have some bad side effects, but they can be temporary.  I noticed My side effects varied after each treatment. 

I don’t know if ulcerative colitis can be one of the temporary side effects. 

When do you see your doctor next? 

Do you happen to know what mutation you have? 
this is good site for finding a trial in case you need to  

https://app.emergingmed.com/lcctacc/home

I hope all goes well. 

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15 hours ago, May2 said:

Sorry to hear your having a hard time. That is scary 😟.

Unfortunatly these drugs can have some bad side effects, but they can be temporary.  I noticed My side effects varied after each treatment. 

I don’t know if ulcerative colitis can be one of the temporary side effects. 

When do you see your doctor next? 

Do you happen to know what mutation you have? 
this is good site for finding a trial in case you need to  

https://app.emergingmed.com/lcctacc/home

I hope all goes well. 

Thanks May! Your comments are so encouraging!  Surprisingly,  I am feeling much better at the moment, no discomfort at all. Hopefully this is not UC but a temp thing, maybe a basic colitis flareup? If there is such a thing...... Anyway, I am scheduled to get my second infusion on Friday. Not sure if I won't ask for a delay yet...I began hurting throughout my entire abdomen last night, which was a new development,  just before bedtime. The intensity told me that I sure wasn't going to be getting any sleep! 

So, after an hour of wondering if I needed to go to the ER or something, I reluctantly,  took a 5mg tab of plain oxycodone without tylenol, and a zofran. I followed that with water and a couple of saltines. I had taken two tylenol an hour earlier. Anyway, I hate taking any opiod because they always lock me up, and I have a few that I didn't need from my lymph node surgery. Well, I was painfree within a half hour and was able to get to sleep. I awoke later, itching on my nose. It was a bit annoying for awhile,  but bearable. I was worried that I might be having an allergic reaction, but didn't have any other symptoms. I finally fell back asleep. I have googled that since and learned something interesting about why opioids cause itching. Apparently the itching is related to the interaction with the immune system, and I know mine is supposedly in full force with this immunotherapy. That is basically why I was experiencing the itching, and it isn't an anaphylaxis thing, thankfully. I was tempted for awhile, to take some benadryl but didnt need to. Less drugs = better.

Anyway, when I got up six hours later, my abdomen remained pain free, but that spot in my left side was back, tender and sharp!  I walked (slightly bent over) around  the house some and suddenly the pain was gone! No pain or soreness  what so ever. That had to be gas! Which suggests to me, based on what I have researched, that I must have an area of colon that has a "pocket" where the gas accumulates? Anyway I don't know if that is something that will be an issue down the road or not. Here I sit two hours later and all is well. Two coffees and my meds with a couple of saltines and all is still well. Fingers crossed. Thanks again.

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Thanks and thanks for the study link. I hope I don't need it. So far, if I am interpreting the report correctly, I think I had four Genomic findings and all have trials in progress with one that has a beneficial drug for my tumor type. This drug is pending FDA approval. Crizotinib

 

 

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PS I have been afraid to eat anything significant, beyond a couple of saltines with my meds. In fear that it might bring back the GI thing. Anyway, I finally decided I better eat something so I had some white rice with a small amount of magarine  and a couple of eggs (easy over), and a biscuit. Seems to be working. I'm three hours in  and all's well.

I read that those items (not the margarine or the biscuit, although white bread was listed as good) are suggested for folks who have diverticulitis. I remembered reading a CT scan report awhile back that identified some scattered diverticuli. So, I believe now that that could be what was going on, as it is consistent in regards to my location and symptoms. 

So, anyway, until I get this properly diagnosed, I won't know if it is diverticulosis, diverticulitis, colitis, ulcerative colititis, or whatever.....Or if any of this is induced by the Keytruda. 

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I've been on Keytruda and Alimta for a year and up until 3 to 4 months ago my side effects were like clockwork. About 7-8 days after treatment I was pretty much back to normal. Since early this year I have developed a very annoying dry cough, always clearing my throat, runny nose, watering eyes and a few headaches when I wake up at night. I assumed it was allergies but realized the Allegra I was taking wasn't helping the symptoms. I've never had a fever either. There has been no sneezing involved which leads me to believe I am now having different Keytruda side effects. Has anyone on Keytruda/Alimta had any changes in side effects? I plan to ask my oncologist during my next treatment but wanted to hear from anyone who might have experienced what I'm going through.

Thanks!

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When I was on Keytruda my symptoms were not very consistent. I would have a combination of different symptoms after each infusion. However in general they were all inflammation related. I had caugh sometimes, runny nose on occasion, Joint and muscle pain, tiredness, headache, fever...etc. they felt like flu symptoms. 

I would say my worst side effect was a consistent shortness of breath,  I would get very tired after walking a short distance. (Short distance can mean walking from family room to my bedroom😬 during  early days right after infusion, or a walk around the block towards the end of three weeks after infusion) 

Taking 2 Advil consistently every 4-6 hours was very very helpful. It defenitly kept inflammation and side effects at minimum.  I always took 2 Advil before going to sleep, it made waking up in the morning a lot easier. 

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Thanks for your response. I had to have an Xgeva shot today and happened to run into my oncologist in the hallway. He thought it was probably allergies and I told him I never sneeze and allergy medicine doesn't help. If the cough persists he will order a chest xray as a precaution. 

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3 hours ago, Rose Kaiser said:

Thanks for your response. I had to have an Xgeva shot today and happened to run into my oncologist in the hallway. He thought it was probably allergies and I told him I never sneeze and allergy medicine doesn't help. If the cough persists he will order a chest xray as a precaution. 

Hope all goes well. Keep us posted ☺️

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  • 2 weeks later...

I wonder if there is a higher incidence of side effects with the new 400 mg every six weeks regimen? I suspect so, since it is twice as much as the standard. I was ready to ask for it but I think I will hold off and see how it goes as others try it.

 

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  • 1 month later...

The nurse called me today and said that the Oncolologist wanted me to know that the labs just came in regarding my cancer marker. Said that it had come down from 76 to 59. Said that was a sign that the therapy might be working. I don't remember hearing much about that test though. But it is called CA-19-9 antigen. I so not understand as this is related to pancreatic cancer. I have NSCLC with mets to axilary lymph nodes. Why would they be testing that?

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Hi Jack! 
I am not sure honestly. 
I know that tumor markers are not usually specific to one type of cancer. It can be present in various types of cancer.  

My doctor tracks my CEA.  CEA is usually associated with colon, rectum, pancreas, stomach and lung cancer. 

Ca-19-9 can be present in various types of cancer as well such as pancreatic cancer, liver, lung, ovarian, and gastric cancer..etc 

However, I am not sure why a doctor would choose to track one marker over the other. So far I have only heard of CEA being used as a tumor marker for lung cancer. I would be curious to know why your doctor chose to track the Ca-19-9.

 You can definitely ask him, and let us know. 

Aside from that, how are you doing on Keytruda? Any side effects? Are you noticing any improvement in cancer related symptoms?  

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Thanks May. I had my fourth infusion of 200 mg Monday.  I met with the PA while waiting for my labs to come back, who explained the MRI results of my neck and left shoulder. I had the MRI  done last week, to try and figure out why I was having pain down my left arm and into my thumb and index finger (burning and stinging). This had been getting increasingly worse over a couple weeks and my right hand was also began getting stiff and sore too. I thought that was probably the Keytruda. Anyway, I knew that I had an enlarged lymph node in the supraclavicular area which is palpable. That was revealed during a CT scan and a PET a couple months ago. After doing some research, I suspected it might have grown and begun pressing on my brachial plexus nerve bundle. The pain was consistent with descripotions of a nerve impingemnt.

Well, a day after the MRI, I felt a sudden relief in the pain, in fact, it was gone! Both sides. I wondered if maybe, the Keytruda had begun to finally kick in.... So, anyway, the results of the MRI cleared my neck and shoulder, but revealed that the lypmph node was directly in contact with the brachial plexus. The PA palpated it and said it felt to her that it was "split in two", and that could be the Keytruda for sure. Fingers crossed.

My tsh is a little higher,  but they aren't concerned about that. She said it would have to go over five or even higher before they would worry.

I hope that you are having positive results too?

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On 12/30/2019 at 12:48 PM, woco said:

I am appreciative and thankful to be on keytruda/immunotherapy, but, I must say, it does kick my butt for a few days after treatments! But, as always, it could always be worse.  I remain positive, but, darn side effects do get me down.  Hopefully, I will adjust in the coming months.  Ken

Hi Ken: When I have a bad day I come back and read your post. It gives me hope that things might get better. How are you and how is your interaction with Keytruda  these days. I hope you are having good progress ..

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  • 3 weeks later...

Jack,

  I am a patient who was on Immunotherpay (Nivolumab) as my second line treatment (Stage IV NSCLC) and like you, I had side effects that would come and go.  Back at the time I was on it we were on a weight based dose, and then over time that changed to a Flat Rate dose of 240 mg every two weeks (for me the weight based was lower, so I never moved up to the higher dose) just to be safer.  Later, then they approved a second schedule which was 480 mg every 4 weeks and that was something I never wanted.  My feeling (just my personal feeling) was that if I was having side effects on a lower dose, that moving to a high dose and having it all in ONE infusion would likely make things even worse.  I know several others who felt the same way and one of us every opted to change our dose/schedule.

   I had relentless fatigue and nausea quite often and felt very "wiped out"...it was pretty rough and for me I found it harder than chemo.  I also have significant GI issue that would come and go, belly pain, sometimes constipation and other time diarrhea that would last a day or so.  We did think it may have been immune mediated colitis, but thankfully my abd scans were fine.  I eventually was given an RX for Lomitil, which helped with the pain and cramping and also had Zofran to take for the nausea.    I also had to learn that naps and extra rest were required, otherwise I felt even worse.   My Oncologist also gave me  two treatment breaks to try and let my body rest and that too helped for a time.

  A little later, I started developed low-grade Pneumonitis (another know side effect), but it was asymptomatic and found only on routine CT Scans.   Because it was low grade it also never met the criteria for treatment with Steroids.   After my third bout my Oncologist decided it was time to stop the Nivo permanently, or at least long term.  Thankfully, by that time it has worked very well and I was stable.   I had my last infusion on 8/31/16 and have been "OFF" treament every since and remained stable.   We do not tract my CEA, as it was never an accurate marker for me and always was in the normal range (even when I had progression) for some folks, it's not very helpful, but for others it can be.

 Long story short, I've now been OFF all treatment for almost four years and I am still Stable and "living life".  I still fatigue, not sure it'll ever fully resolve, but I can live with that.  No longer have any GI issues and never had any LC symptoms.  My Oncologist is thrilled with my results and told me just last week that he sees this as a long term and very durable response and does not expect it to change  I do have some lingering Ground Glass Opacities, but they have improved and do not cause me any problem.  For me, I feel the Immunotherpay was a life saver and despite the side effects, was WELL worth it. I'd do it all over again today if I knew it would give me the same results.

Hoping you can get though the side effects and that you too will do very well.

Best wishes,

  Lisa

PS:  I did develop low grade hypothyroidism and that was treated with low dose Levothyroxine.   They also monitored my Thyroid and Cortisol levesl thoughout treament, as those can contribute to fatigue.  In my case, it's complex because I also have Fibromyalgia and significant degenerative disc disease.  Currently pending my second hip replacement surgery, which has been on hold because of Covid and is due to happen in few more weeks.    I also had a lot of muscle/joint pain on Nivo, but with Fibro and the DJD, it was almost impossible to know if that was from the Immunotherapy or the other conditions.     

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Hi Jack: Sorry to see you having a hard time. It seems none of us is immune to side effects. I am having issues with appetite as well. My oncologist gave me a pill called MIRTAZAPINE 15MG that I take before bed time. It takes few days before it starts working and also  a liquid called MOGESTROL ACETATE ORAL SUSPENSION 40mg/ml That I take daily before lunch. I am finding that eating helps ease a lot of other symptoms. You might want to ask your doctor about the medication. I hope you do better soon.

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3 hours ago, Lisa Haines said:

Jack,

  I am a patient who was on Immunotherpay (Nivolumab) as my second line treatment (Stage IV NSCLC) and like you, I had side effects that would come and go.  Back at the time I was on it we were on a weight based dose, and then over time that changed to a Flat Rate dose of 240 mg every two weeks (for me the weight based was lower, so I never moved up to the higher dose) just to be safer.  Later, then they approved a second schedule which was 480 mg every 4 weeks and that was something I never wanted.  My feeling (just my personal feeling) was that if I was having side effects on a lower dose, that moving to a high dose and having it all in ONE infusion would likely make things even worse.  I know several others who felt the same way and one of us every opted to change our dose/schedule.

   I had relentless fatigue and nausea quite often and felt very "wiped out"...it was pretty rough and for me I found it harder than chemo.  I also have significant GI issue that would come and go, belly pain, sometimes constipation and other time diarrhea that would last a day or so.  We did think it may have been immune mediated colitis, but thankfully my abd scans were fine.  I eventually was given an RX for Lomitil, which helped with the pain and cramping and also had Zofran to take for the nausea.    I also had to learn that naps and extra rest were required, otherwise I felt even worse.   My Oncologist also gave me  two treatment breaks to try and let my body rest and that too helped for a time.

  A little later, I started developed low-grade Pneumonitis (another know side effect), but it was asymptomatic and found only on routine CT Scans.   Because it was low grade it also never met the criteria for treatment with Steroids.   After my third bout my Oncologist decided it was time to stop the Nivo permanently, or at least long term.  Thankfully, by that time it has worked very well and I was stable.   I had my last infusion on 8/31/16 and have been "OFF" treament every since and remained stable.   We do not tract my CEA, as it was never an accurate marker for me and always was in the normal range (even when I had progression) for some folks, it's not very helpful, but for others it can be.

 Long story short, I've now been OFF all treatment for almost four years and I am still Stable and "living life".  I still fatigue, not sure it'll ever fully resolve, but I can live with that.  No longer have any GI issues and never had any LC symptoms.  My Oncologist is thrilled with my results and told me just last week that he sees this as a long term and very durable response and does not expect it to change  I do have some lingering Ground Glass Opacities, but they have improved and do not cause me any problem.  For me, I feel the Immunotherpay was a life saver and despite the side effects, was WELL worth it. I'd do it all over again today if I knew it would give me the same results.

Hoping you can get though the side effects and that you too will do very well.

Best wishes,

  Lisa

PS:  I did develop low grade hypothyroidism and that was treated with low dose Levothyroxine.   They also monitored my Thyroid and Cortisol levesl thoughout treament, as those can contribute to fatigue.  In my case, it's complex because I also have Fibromyalgia and significant degenerative disc disease.  Currently pending my second hip replacement surgery, which has been on hold because of Covid and is due to happen in few more weeks.    I also had a lot of muscle/joint pain on Nivo, but with Fibro and the DJD, it was almost impossible to know if that was from the Immunotherapy or the other conditions.     

So glad to hear about your good response. I hope remaining side effects will continue to resolve. Thank you for sharing. 

Would you mind sharing with what NSCLC mutation you had. 

Thank you. 

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Thanks Lisa and Gary. So glad to hear of your success Lisa! It is very encouarging and I pray that all of us here end up in the same boat as you. As for my arm and shoulder pain, it has returned with a greater intensity and duration and was interfering with my sleep! I don't like opioids because they lock me up. So now, reluctantly, I am taking Ibuprofen 400 mg every twelve hours, and it is helping with the pain. I actually slept most of the night for a change. My Onc approved it. NSAIDS are hard onthe stomach and I am not on blood thinners other than my daily 81 mg aspirin and fish oil caps. I hope to be able to wean off it ASAP.

As for the chronic constipation....ughhh 

jack

 

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May and Jack

  I have KRAS (12v) and currently there is NO FDA approved drug for this mutation.  There are two Clinical Trials for KRAS 12C that seem to look promising, but they would not work for me, as I did not have that Variant. 

   As a follow up, I met with my Oncologist last week, after my scans for results and happily I am still stable and my GGO (Ground Glass) continues to improve.  He is thrilled with my results and feels based on my long term response and data from the clinical trials, that I should continue to do very well for many years.   He also said that at this point (now over 4 years stable without any treament) that IF I did develop cancer it would MOST likely be a totally new cancer and may not even be KRAS+.  And IF I do have any signs of any new cancers they would do a new biopsy and full genomic profile.   That was very interesting and exciting news.  NOW I hope I am going to remain stable, and if for some reason I do develop a secondary LC, I'm going to hope it's not KRAS again.

  As for NSAIDS, I can no longer take them or aspirin, due to GI issues from long term use for many years for pain due to Fibro and long term degenerative disc disease and also because I'm on blood thinners.    I am now on a pain patch which is opiate based, but it's necessary for me and I've adjusted to it at this point.  Hoping once I get through my upcoming hip surgery I can slowly taper off it or at the very least decreasemy dose.  I spent years trying to find the right meds for the most significant pain management and it was a Palliative Care Team that was able to help me figure out the best options.    I do not like to take a lot of meds (even though I'm on quite a few), but sadly with some illnesses it is necessity and if that's what it takes to have the best quality of life, I'm fine with it.

  Best wishes to you!

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  • 1 month later...
On 8/12/2020 at 6:57 AM, Lisa Haines said:

May and Jack

  I have KRAS (12v) and currently there is NO FDA approved drug for this mutation.  There are two Clinical Trials for KRAS 12C that seem to look promising, but they would not work for me, as I did not have that Variant. 

   As a follow up, I met with my Oncologist last week, after my scans for results and happily I am still stable and my GGO (Ground Glass) continues to improve.  He is thrilled with my results and feels based on my long term response and data from the clinical trials, that I should continue to do very well for many years.   He also said that at this point (now over 4 years stable without any treament) that IF I did develop cancer it would MOST likely be a totally new cancer and may not even be KRAS+.  And IF I do have any signs of any new cancers they would do a new biopsy and full genomic profile.   That was very interesting and exciting news.  NOW I hope I am going to remain stable, and if for some reason I do develop a secondary LC, I'm going to hope it's not KRAS again.

  As for NSAIDS, I can no longer take them or aspirin, due to GI issues from long term use for many years for pain due to Fibro and long term degenerative disc disease and also because I'm on blood thinners.    I am now on a pain patch which is opiate based, but it's necessary for me and I've adjusted to it at this point.  Hoping once I get through my upcoming hip surgery I can slowly taper off it or at the very least decreasemy dose.  I spent years trying to find the right meds for the most significant pain management and it was a Palliative Care Team that was able to help me figure out the best options.    I do not like to take a lot of meds (even though I'm on quite a few), but sadly with some illnesses it is necessity and if that's what it takes to have the best quality of life, I'm fine with it.

  Best wishes to you!

I am so glad to hear you have been stable. That is great news. Thank you for sharing.  Hoping your pain will ease up, And praying your surgery goes well. 
 

 

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1 hour ago, jack14 said:

I hope so too. As for me, my pain has eased off to the point that I no longer need anything for it anymore. That happened a few weeks back. Thank you Lord.

 

I am glad your pain eased up. 
any scans? 
 

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On 9/16/2020 at 6:27 PM, May2 said:

I am glad your pain eased up. 
any scans? 
 

Just had my seventh infusion today, and she will order one after my eigth next month. The lymph nodes aren't palpable anymore. That's a good sign I think.

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