Good Morning! What a week! We've had some beautiful fall days, though.
Tuesday
Smoke alarm started chirping in the afternoon. Loud and insistent--chirping five times in a row when it did. Never had it quite that persistent before. Leah came to my rescue about 2 hours later and took it down. (Good thing Allie is a calmer cat about loud noises--Karma and Annie would have been going crazy!) Turns out says on the back that if it is chirping five times in a row like that it means it is the end of the entire alarm. Needed the whole entire alarm replaced. Well, all three alarms have been here since they opened so I wanted them all replaced. With the bad knee I don't trust to climb up that high and I can envision one going off in the middle of the night, right? That's when they usually give up the ghost.
I discovered that when you call the new maintenance number they gave us a couple months ago you get a call center now. Options as to which number to press for which type of service and all that. More impersonal. I got a guy I could barely understand (India?). He relayed the message and then I got a phone call from another young man who asked me to text him my address. He showed up with two smoke alarms (probably no more in his truck)...but he was polite and efficient. Things seem to be really changing around here.
Wednesday
Was doing laundry before my afternoon CTscan and the washer went crazy again! You may recall how it went off the track or whatever it did so that the inside barrel where the clothes are was slamming from side to side. That wasn't that long ago! Luckily it didn't break until it was closer to the end of the spin cycle so I had super damp, soggy clothes but they weren't dripping. Took all day to dry them.
Since I had the CTscan that day, would be shot the next day, and then had my infusion so early on Friday (8am)...I decided to wait to call maintenance until this week. (And I may wait until tomorrow honestly--pretty exhausted.)
Dr. Kim (dermatologist) called me in the morning. I have benign lichenoid keratosis (the bumps) that are no issue. They may disappear or may not, but not cancerous and nothing to worry about. With Keytruda you get rashes and this wasn't a rash so not caused by Keytruda.
Okay.
I had not gotten the results online on My Chart from the dermatologist--well, at least by the last I had checked on Monday night. Usually we get results right away. (They even have a notice on the site that you will probably get results before your doctor.) I wasn't as concerned about those results so forgot to check after they weren't there by Monday. My Chart has had issues lately, as you know.
After he called I did check and the results were there. I looked up benign lichenoid keratosis online and they "happen when the immune system attacks your cells for no obvious reason". I saw images and mine are so small--whew! Glad of that! But not caused by immunotherapy which encourages your immune system to attack the cancer cells that try to cloak that they are dangerous...and they warn and watch because your system can start attacking perfectly good cells...but it has nothing to do with Keytruda??
Anyways, went off to my CTscan...which was quick. Another girl there recognized me by my cat bag--LOL! And this was at the hospital! I haven't been there nearly as much as the clinic--LOL! I am being quietly recognized by my colorful, crazy, cat bag, I guess. :)
Leah and the boys had dropped me off. I texted her when I was done. They took a long time to arrive from a nearby park. The boys had gotten into trouble because they wouldn't stop playing and come when Mama wanted them to. They didn't want to admit what they had done to get in trouble. I told them everyone does things wrong...but if you can't face up to whatever you've done how will you ever learn not to do it again? They finally did (in whispers)...and promised to listen to Mama and Daddy...and Gramma. ;)
When I got home there was a note from Gerald (I'm sure that is my regular maintenance man) saying he had changed all the batteries in all three alarms--ROFL! They obviously have a communication problem with this new system.
Fell asleep after home and slept till evening. Then couldn't sleep at night.
No results came up on My Chart online for my CTscan.
Thursday
Caught three hours of sleep in the morning.
No results all day.
Friday
Up at 4:30am.
Still no results on the scan. Checked right up until we were in the waiting room for my visit with Brittani. She had them--but they weren't signed off on as final yet. (Maybe short staffed?) Anyways, she said that the tumors were unmeasurable. Almost gone!
Wonderful!! I wanted to know when I could get my next scan (4 months-January 2023). Leah asked if the tumors were gone by then how much longer would I have to be on Keytruda?
A year!
A year?!
I'm sorry--all I could think of is NO!
It's like telling someone who's been bedridden for a year that even if you are healed in another four months we are going to keep you in bed and feeling sick for another year to be on the safe side.
Brittani said that is what they recommend at Mayo Clinic, etc. Leah seemed to agree with following what they say...because they think it will up the odds of keeping the cancer from coming back. Well, I have four months to investigate and do research. But all along I have felt like if they disappeared I would get off Keytruda (even though it always sounded like they wanted to keep me on for a while longer). I remember talking to Dagan about it back when the tumors were first shrinking. I thought I talked to Leah about it back then, too, but maybe not.
That took all the joy out of the good news for me, to be perfectly honest. Well, not all, of course. But you know what I mean, I think.
I got home. Leah came in and cut my hair for me. (Feels so much better--thanks, Leah!) After she left I fell asleep for a couple hours. And still slept that night--for almost 10 hours.
Saturday
Leah picked up my KitchenAid mixer that sold! Nice! Everything I can sell goes towards my new future furniture from IKEA. :)
I was a zombie-woman. Two appointments in three days. R&R day for sure. I did order two new (not expensive) floor lamps from Amazon. Wanted them for the new place, but figured I could really use them here now. They have different ranges of brightness and tone. I thought that might help with my aural headaches that seem to be set off quite a bit by bright light. Can't hurt.
Sunday
I spent the day researching Keytruda online...again. I looked on Mayo Clinic website and they didn't have a lot--and nothing new to me. I spent a long time on the Keytruda website. After all, they are going to try to give the best picture possible, right? They want to sell product.
Looking up clinical trials and statistics...not much information. It's only been around for six years so how much long term information can they have. (That's my point of contention.)
As I told you when I looked up information before (beginning of the year), there seemed to be mostly information on how long it kept patients alive and prevented tumors from growing. Appeared to be mostly used as a palliative treatment to keep people alive when chemo wasn't working anymore. Tumors can shrink but for tumors to actually disappear--well, that was unusual--"almost miraculous" it said on one website. So how much information can they have on people who have had the cancer disappear? (And mine are not completely gone yet--would still be considered a partial in statistics.)
There is some information on all kinds of cancers it has been used on. They now also give Keytruda with chemotherapy, too. Not much on clinical trials. Statistics: I found one where it said tumors disappeared in 2 out of 299 patients or 0.7%. Another had 6 out of 154 patients or 4%. Another said 7% out of 270 (I'm not good at math so I don't know how many people that is-lol!). Those were for various kinds of cancer. The only thing I found about bladder cancer specifically (never saw anything about liver cancer) had some statistics on Keytruda being given along with chemo (how many alive after so many months)...if you wanted trial results for patients who could not be treated with chemo you had to ask your doctor for the results. ??
So there doesn't seem to be a lot of information on patients whose tumors disappear. Exactly what I suspected. It is still on the rare side...but they are trying more things.
They do caution that patients who have colitis or immune deficiency issues may not be good candidates. How the patients immune system can attack good cells anywhere in the body at any time during the treatment or even after treatment has stopped...and this could become fatal.
I already had chronic fatigue, fibromyalgia, IBS issues, and arthritis so badly for the past 20 years that I have been disabled. All that exhaustion, joint pain, stiffness, headaches, sinus issues, and weakness has been worse this past year than ever in the last two decades. All those symptoms are listed for Keytruda. Yes, my eyes had been more sensitive to the light since my cataract surgery but now I am getting aural headaches regularly the past--what?--couple months? Also bleeding gums. And then there's the lack of focus and forgetfulness...swelling in ankles (and bad knee swelling just stayed). Also, the weird bumps that are no problem and not caused by Keytruda, of course, because they aren't a rash. I seem to gradually be getting even more tired and sleeping longer at times--other times trouble sleeping (another side effect listed).
Honestly, it is one thing to endure all this while the battle is on-going, you know? Being barely functional...having to have Leah still doing supplemental cooking for me...dozing off regularly...feeling like I have the flu most of the time...dealing with BMs that are like paste...even my teeth hurt...still don't trust to walk all the way to the parking lot at the clinic or hospital and have to have Leah drop me off at the door and pick me up...
But to tell me I have 16 more months to deal with this...an extra year even if the tumors are totally gone in four months...
My optimism...my patience...my very soul...is weary.
Even if you are healed--cancer free--we will keep you feeling like death warmed over for another year??? How will my body deal with Keytruda for that long? I already have many reactions. Many of the side effects have just been awful magnifications of all the stuff I have lived with for 20 years...but some are new. They aren't severe enough to have forced me to stop...yet. But I have only been on it since mid-December.
Would staying on it another year actually be a preventative of any kind? What are the actual odds? Actual statistics? And how much can they know in six years when it was started out as a kind of last resort treatment? And there are still very few people who go into remission in the first place? I could still get cancer again. People do...sometimes years later. Couldn't my body use a break? Or do they find that people who go off of it right after the tumors disappear get cancer back right away? I couldn't find any information on that.
I did find a telephone number for Keytruda for asking questions. But aren't they going to want to sell it for another year? Doesn't "to be on the safe side" sound logical to people?
So if I say I had mixed feelings about my visit Friday...that is an understatement. I am thrilled that the tumors are almost gone. Absolutely!!! (I learned online that once they are under a centimeter they are considered "unmeasurable"--they can still be a dark spot on the Xray--just too difficult to measure.)
I am definitely going to ask for some GA guidance on this one.
I have felt all along that I wanted off of it after the tumors disappeared. Is that just me thinking that because I am so tired of feeling so awful? But I have felt that way all along when I wasn't feeling as badly as I have been as this year has gone by? (I do feel like I have generally gotten worse the past few months.) Is what I feel in my gut (and have all along) the right thing to do...or not? Could my body handle a compromise of say doing every six weeks for another four months next year? (Some people get treatments every 6 weeks and some get every 3 weeks I read online.) Or would that push my body over the limit? I am wondering how I'll even get through the next four months. But I am still enduring to get through to the finish line--push-push-push...so I think I will make it--LOL!
It's a lot different during the battle than enduring all this after the battle is won, you know?
Well, that's the week I had.
Good and bad.
The weather has been wonderful! Fall is already here. The partridges and sparrows are bunching up for the winter. The grackles are already gone!
10 comments:
I read through this post a couple of times, Rita, and I can certainly understand your feelings about wanting to get off the meds. It's great that the tumors re nearly gone. That's such uplifting news, and whether or not staying on this medication longer will keep them at bay is anyone's guess it seems. Certainly, the side effects have been debilitating in so many ways for you. Sorry that I cannot offer a definite yeah or nay way to go. I recently had some lab tests that came back high in a couple of areas and I want to hear from the nurse practitioner if any meds will be recommended. My reply would be a definite No and a change in diet and foods would be my choice. But, of course, it's not the same for yourself and your situation.
As you said, ultimately, it is your decision and perhaps your GA can help you in this area. I know that your family has definite opinions as well. Your blogger friends will stand behind and respect whatever decision you finally make.
I'm glad you don't have to make any decisions for awhile. The fact that you feel so awful from the treatments make me think it's a good idea to give your body a break from them, for a little while at least. But the fact that the tumors have grown so small is really wonderful news. I'm still including you in my daily prayer session. I'm not stopping, either! :-)
Well i don't think i can say it any better than Beatrice.. We are all behind you even if we don't have the answers.. I try my best to go with my gut feeling.. i've learned to trust my gut over the years.. I think they would have to show me some definitive proof to get me to stay on it longer.. Love ya much Rita! Hugs! deb
Hi Rita. I am so glad that the tumors have shrunk so much. I get your misgivings about staying on Keytruda. I am sure you will make the correct decision. So glad you have had some nice fall weather. Have a good week. See you again soon!
Such good news that the tumors are so small they cannot measure them. You will have to weigh all your options, they are coming up with new stuff all the time. Communicate with your Doctor about how you feel. You have a while before you have to decide anyways...so think about everything and weigh your options! :)
I watch those medical ads and half the ad is concerned with what COULD happen to the person. I know how concerned you are with Keytruda. I would be too.
Nice your tumors are shrunken beyond measurement. That is wonderful news.
We're having some lovely weather here too with Spring officially starting on 1st of September.
I'm glad they sorted your smoke alarms. So important.
I usually find our washer does that when the load has become unbalanced. I usually adjust the clothes so the weight is evenly distributed, close the lid, and then it works fine again. Is your machine a front or top loader? Mine is a top loader.
Good that the bumps on your skin are not anything to worry about.
Fantastic news on the tumours!!! I'm so happy for you!!
They will want to keep you on the treatment so they can be absolutely sure you are in the clear. It makes sense. If any new cancer cells develop during that year, they will be dealt with immediately. The nasty side effects may be worth it in the long run? No matter what, there is always a chance that the cancer will come back even after that extra year on Keytruda. You definitely have things to weigh up. At the end of the day, it's your body, your call.
Lovely to see pics of the birds and Allie, of course.
Enjoy your week,
Serena x
That IS good news, Rita. Maybe the clue word to the extended treatment is "almost gone." We all know those things can return so maybe it's a smart (if completely unpleasant and miserable) idea. I don't know but I admire your persistence in trying to find out. I sure understand the misgivings about staying on the meds. Maybe your doc can explain more completely why. I hope whatever you do, it works out like a charm.
What a time you are having and what anxiety you must be feeling. Best wishes.
Your increasing maintenance issues make me even more happy you're able to move :)
What wonderful medical results! I'm sooo happy for you!
Post a Comment