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After having radiation and chemo treatments, tumors came back. Then my tissue studies showed that Keytruda was an appropriate treatment fir me.

I received Keytruda treatments for metastatic uterine cancer for 11 months. Had complete response and after two clean scans decided to stop treatment. The last treatment was in May. Had a scan this month , November, and all is still clear. There isn't much data out there to help make a decision as to how long to continue treatment. There is a study done by Dr. Caroline Robert, a dermatologist in Paris, of melanoma patients that suggests durable long term affects of Keytruda treatment. 

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My father has Stage 4 NSCLC. 2 spots on the lung. Metastasized to his scapula and hip and lymph node. We started a combo Pemetrexid/Carbo/ keytruda. He has had 4 rounds. Looks like the original tumors have shrunk. But we now find out it has metastasized to his brain. They say they are all very small spots but there are at least 10 spots. They want to wait to treat the brain. I'm scared.

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Linda,

I know the feeling. Lung cancer is frightening and brain mets are very serious expansions.  If the mets are very small, radiation oncologists often wait till they have a larger target for precision radiation.  There are two types of precision radiation commonly used to address brain mets: SBRT (Stereotactic Body Radiation Therapy) and IMRT (Image Modulated Radiation Therapy).  I had the former to address a tumor in my lung and my daughter had the latter to fry a meningioma in her brain near her optic nerve.  Here is more information about these types of radiation.

There is also a less precise technique used to treat brain mets: Whole Brain Radiation Therapy. This was once the standard of care before precision methods were discovered but is still sometimes still used.  

All radiation treatment is painless.  Precision radiation is normally administered in one to three doses but it takes time to prepare for treatment.  Often several detailed scans are performed to map the tumors in the brain and a computer program is tailored to steer the radiation arm to the proper locations.  Ask your dad's radiation oncologist about the plan for addressing the brain mets.

Questions -- this is a good place for answers.

Stay the course.

Tom

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Thank you Tom. This is my fathers second round of cancer. He had a total laryngectomy due to laryngeal cancer and beat that. Now this battle with metastasized lung cancer. He has not been eating and is sleeping almost all of the time. I am not sure what to do. We coax him to have boost shakes but it's a struggle. Sometimes he only has one boost a day and nothing else.

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Mom had another scan right before Christmas. Everything looked great, but the doc was concerned about some of her blood work and decided she  should skip a treatment to give her body a break. He said he wouldn't normally do that but her scans have been so good he felt confident it would be better to wait. Her treatment resumed today and she seems in good spirits. The worst she is experiencing right now is very extreme fatigue and dehydration sometimes. They have been giving her an IV of fluids after each treatment which has helped. Occasionally she has to go to the ER in between for more when she can't keep enough water in her system. Doing my best to watch her and make sure she keeps hydrated and healthy. So grateful for the care and treatment she is getting. Prayers and hope for everyone  here in the new year!

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Helpingmom,

I am happy to hear that your mom's cancer is stable! Happy dance!

It's not uncommon for people need to take periodic treatment breaks during immunotherapy. My mom has been on a few different breaks over the past 1.5 years. Keytruda is effective for about 25 days in the system. And just because Keytruda may not still be "working" that doesn' mean that the immune system isn't still working overtime. So taking a break for 1 session is usually no big deal at all. It's nice to give the body a break.

Happy new year to you!

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Helpingmom,

We're glad that your mom had good scans! Please continue to keep us posted on how you're both doing.

With gratitude,

Lauren
--
Digital Community Manager
LUNGevity Foundation

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On 6/8/2017 at 2:15 PM, Woodburn9 said:

Hi, I haven't taken Keytruda but am on opdivo and they are very similar. First off, your mom is stage 4 because it has traveled to another organ and at this time the standards of treatment is no surgery. BUT do not let that get you to far down because immunotherapy can get rid of the cancer or keep her stable for a long time. Everybody experiences different side effects at varying times and severity, no two are really the same. When I first started immunotherapy I had a runny nose and eyes for about 3 hours every morning, after about 6 weeks this went away, then I had knee pain, again this later went away. Now at almost three years of taking immunotherapy I am experiencing fatigue and I am cold all the time. I can't wait for this to subside also. Severe heartburn hit at about a year on the drug so I take over the counter Zantac twice a day. Others have has rash that sometimes itches, diarrhea that required medication to calm down. A few people gave had fevers and flu symptoms after their infusions for about four episodes then it went away. Things to report: ANY shortness of breath, abdominal pain, diarrhea. Good luck to your mom.

 

My Uncle also has zero energy and is always cold. He also can't taste his food, everything tastes the same to him. He is only 126 lbs. right now ☹️

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Just now, Tashia said:

My Uncle also has zero energy and is always cold. He also can't taste his food, everything tastes the same to him. He is only 126 lbs. right now ☹️

Fevers as well, which he has to take Tylenol to lower.

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On 6/8/2017 at 2:17 PM, Suzanne said:

Helping mom,

In April I was diagnosed with stage 4 nsclc which had spread to the spine. I have had 2 Keytruda infusions with fairly minor side effects (slight nausea, fatigue, constipation). My third treatment is next Monday, after which I will have an MRI to see if it is working. ??emoji1317.png The radiation treatment for the spine had far worse side effects, esophageal spasms. Scared the daylights out of me! I have high hopes that the Keytruda is working.


Sent from my iPad using Tapatalk

Any new updates on how you're doing? Your diagnosis sounds really similar to my Uncle's. 🙏

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Tashia,

It is actually my mom going through this. They said everything right now is stable which is wonderful. She does get very nauseous and then dehydrated or sometimes the dehydration from the keytruda makes her sick so it's a struggle for sure. They recommend only sipping water, don't chug it and eating just a little at a time throughput the day  which has helped also. She is now been scheduled for fluids in between each treatment which helps so much. We are so grateful for the care and treatment she has received. Keytruda really is working well for her. Prayers for you your uncle! 

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Just a update on my mom and a few questions for those on Keytruda. My mother has been on keytruda since summer 2017. Her tumors have all gotten much smaller and can barely be seen on the scans. A few months ago, her liver counts were extremely high so she was prescribed steroids to help control it. She has been on a treatment break for almost 6 months now. Her doctor said today he wants to continue her break for 2 months, but doesn't want her back on keytruda even though her liver has gone back to normal levels. This scares me because the keytruda has been such a miracle and is still working for the cancer. Has anyone been through a similar situation? My mom wants to continue with the keytruda also. Thank you as always for any input/advice.

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Treatment breaks are scary...my mom is on a break for the foreseeable future and has been since October 2018.  Her "break" was initialized by inflammation throughout her GI area.  She was prescribed steroids and it eventually got better.  Her cancer had been stable (no evidence of active disease) for about 6 months or so prior to the break.  Since her cancer was stable, her doc suggested they just continue with scans and if something pops up, they will deal with it then.  The next plan of action will be based on the type of lung cancer, but if it is the same thing, the oncologist stated they would probably have her start on a similar immunotherapy, but not Keytruda again.  There are 2 other immunotherapies that work very similarly to Keytruda.  Some people end up having the same side effects, others don't have any side effects or different side effects.  

The liver toxicity is one of the biggest concerns that docs have when it relates to immunotherapy.  The fact that your mom's liver counts have returned to normal is great, but I am not surprised her doc wants her off of Keytruda.  I have 2 thoughts: 1)might they consider one of the other two similar immunotherapies? If so, that's probably a great option.  2) Might they consider reducing the dose of keytruda?  At this year's LUNGevity International Lung Cancer Conference, doctors spoke to treatment toxicity and how everyone reacts different to the same dose of a drug.  Drug toxicity and side effects can often come from the liver metabolizing the drug too fast or too slow.  I have heard of folks getting reduced amounts of Keytruda, which helps to lessen the side effects (specifically related to pneumonitis) and continues to keep the lung cancer at bay. 

I see also that your mom has come up on the 2 year mark for immunotherapy.  Is your mom's cancer stable enough that they would discontinue treatment like they have with my mom?  Is the "barely seen" lung cancer still cancer or is it just scar-type tissue?  My mom has had additional biopsies to see if the inflammation surrounding her cancer was cancer or not.  The biopsies came back negative for cancer and although we can't be 100% sure that there is no cancer there, we do know that nothing is changing for the worse.  Ultimately, my mom and I will not be surprised if the lung cancer pops back up since it has once already, but we know that if it is the same kind of cancer, it responds well to known treatments.  We are, in a sense, treating her lung cancer like any other chronic health condition...wait, watch, treat.  

I don't know if any of this helps...

Take Care,

Steff

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Excellent info from Steff!  I'd like to add that if your mom isn't comfortable with or has concerns about what her doctor recommends, she could get a second opinion. This wouldn't have to mean changing doctors. It could reinforce her doctors point of view or it could give some suggestions of alternatives.

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Thanks so much to both of you for taking the time to respond. The doctor has told her before that she will be able to take breaks from treatment as long as it remains stable. I guess I was wondering if like you mentioned, she could get keytruda less often or a smaller dose or if anyone has been through a change like that instead of being completely off of it. I will definitely do some more research. They haven't said anything about it being anything but the cancer in her lungs and liver. Her doctor is actually the head of the oncology department so I know she feels awkward about seeking another opinion, but believe me, if we feel it necessary we will do that. Thank you again. This was a huge help.

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