2017 Diagnosed-- A Place To Share "Whats Next"
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Today I got the results of my latest CT scan and the cancer has spread and is in my right lung and something about a mammary nodule too. Three new lung nodules, which are all less than half an inch big. A lot worse in the supraclavicular area as well. Terrible news. But health-wise I feel really great so it's terrifying all this is happening.
I did have Foundation One testing a few months ago which showed high PDL-1 levels. I will start Keytruda next week hopefully but right now am waiting for insurance approval. The MO does not think it will respond to chemo but I might do chemo soon if the Keytruda isn't doing anything. I hate to be on chemo again. On a side note, during the awful appointment, the MO said, "I know you don't care if you lose your hair." What?! I don't know why he said that because I don't want to lose my hair again!
Also, on an unrelated note: I stopped taking Effexor and wanted to post about the experience for anyone looking for information. I was on the 37.5 dose once a day, which was not supposed to be a therapeutic level, just for hot flashes (it helped the hot flashes tremendously over the past 11 months I've been on it). But even at that level I think the Effexor was really affecting me even though it wasn't a therapeutic does.
The doctor that prescribed it moved out of state and the new doctor in that office (gynecology onco) was no help getting a refill even though I told them I was afraid to just quit taking it because of withdrawal. They did help me get a prescription refill after a few days but by that time I was already in withdrawal. Withdrawal was basically like motion sickness with what I call brain shivers I guess. Hard to describe but it's been about a week and every day it's getting a lot better. I didn't realize how much it was sapping my energy and dulling my brain. I always blamed the Herceptin.
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Scrafgal, how do you like your nipple tattoo? How did you get it? Did the plastic surgeon arrange it or did you find someone on your own?
I am in the process of trying to get a breast reduction/fix the right breast that had a partial mastectomy. Hopefully I will still be able to do that. One possibility of that surgery is your nipple tissue dies and I was thinking if that happened maybe I could get a 3-D nipple tattoo.
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Dazzlingeagle- I am so sorry to read about your scan results. I wish I knew the right words that would help you but I don’t. I do want you to know that I do care about you and will keep you in my prayers.
Really hoping insurance approves Keytruda and that it starts kicking C’s butt right away.
We are in your pocket as you go through this. Post here and lean on us. You are not alone.
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DazzlingEagle I am sorry to see your news. I hope the keytruda works and you don’t have to wait on insurance approval for long.
On the nipple tattoo note, my PS has a BC survivor tattoo artist that comes to his office to do them. I’m getting set to schedule mine now that the nipple reconstruction is finished healing. I’ll let you know how it goes.
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DazzlingEagle, that is awful news. I hope you find a way forward because often just keeping going takes all the strength we have. Hugs.
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Thanks for your support. It means a lot to me.Family means well but they never say the right thing. Ever. And especially when they are uncomfortable and fall back on religion. I hate hearing about so-called God's plan sooo much. Sometimes I wonder if it's easier just not telling anyone in RL.
Anyway, I'm calming down. Probably in a little denial again too. After my horrible day, I started getting the garden ready for when I work on it again in the spring. If I'm here in the spring, I'm here and if not, then I'm not. I'm not going to worry about it anymore. I will let you all know what happens next week.
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sorry to hear that news dazzling eagle. You said you are feeling good despite the scan, I sayfocus on that and live your life. I also hope the keytruda gets approved ASAP. The withdrawal didn’t sound fun, not like you needed that with everything else going on. Hang in there, lean into this group, we’ll meaning family can leave us feeling alone and misunderstood sometimes.
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DazzlingEagle,
I am sorry to hear the results of your scan. I also hope that you get approval from your insurance company for keytruda. I totally get why you were taken aback by your MOs comment about your hair. My hair came back after chemo and then fell out again--diagnosed as alopecia areata---likely the chemo messed with my immune system too much. Anyhow, because I am coping well--meaning, I am not clinically depressed, go out to work and attend social events--my baldness bothers me immensely! Yet, most doctors and friends think that it does not bother me because I don't talk about it constantly. I just go about my business. Someone actually said, "So, you cool with no hair, right?" I was floored by that! I am paying thousands out of pocket monthly for a drug that works for alopecia areata (just started 3 weeks ago) but insurance won't cover it because hair is not medically necessary and its an off-label use for the drug. I'm appealing, but it takes time. All that to say, some people really make huge presumptions about what they think they know about what you care about! Stay strong, and keep us posted.
As for my nipple tattoo, I love it! I might need a touch up, but it is hard to tell because the scab (sorry TMI) is just now coming off. So, you sorta have to wait for things to settle to see how the color/shading turns out. All in all, though, it looks pretty good right now! My mastectomy scar was so small that now, after the nipple tatoo, there is only half an inch or so that shows on one side of the nipple. That's it! Amazing!
I got the tatoo done at MD Anderson, where I was treated.
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Hi all,
It has been a while since I last posted. I got good report cards from my BS over the summer and I recently saw my MO a few weeks ago and she said all looked good. Tomorrow morning I go in for my MRI I hope my only left girl keeps on being good and that the right MX keeps on staying flat. My BS told me over the summer that because of my family history of BC and my ADH I have a 43% life time risk of getting more BC. I often think about if I should have gone for a BMX, but I like having one health breast, so I guess I will wait and see if it keeps on staying healthy and give it the benefit of the doubt. I have had conversations with it and told it if it starts to show signs of getting sick then a MX will be in its future.
On a lighter note, while I wait for my MRI results I will have Halloween candy to eat and I have 4 parent-teacher conference on Thursday to keep me busy.
DazzlingEagle: You are in my thoughts and I want to send you all my Love and Hugs. What you are going through sucks and is horrible. We are all here to support you through this
TaRenee How are your children at school doing what plays do you have planed for this school year? Most of my little preschool kids have been sick for the past few weeks. They shared one of their colds with me but thankfully it was short lived.
Hugs and Love to All,
Sara
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sm627– good luck with your MRI. Hope results are clear.
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Sara, school is going well, thanks for asking. I have really big classes compared to last year. Between 18 and 22 in each class. It’s a bit of a challenge but I’m enjoying them. We went on a field trip to see a play today and they loved it. We haven’t scheduled a play for the year yet. We have some repairs going on. The ac leaked on the stage floor over the summer and warped it so that is getting fixed. Then they are going to refinish it. The speakers literally blew up when a group outside of school used the space so now I have to replace them. So, hopefully in the spring I can get something scheduled.
In other news, I have a foot doctor appointment next month to see what the problem with my feet is if it’s not tamoxifen.
I also am trying to get my tattoo appointment set up. Has anyone done that? What is the recovery time like for that?
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Insurance approved Keytruda. I think this recently happened, that if your cancer has certain mutations showed by an FDA approved test, you can get approved for Keytruda?
So the FDA approved test I had done to show the PDL-1 mutation was with Foundation One. My insurance denied the claim. The amount was in two different claims and over $10,000. I haven't gotten a bill for it yet.
I received the Keytruda infusion a couple of days ago. The side effects hit me like a truck the same day but after just two days they are almost gone. Side effects were a fever, chills/shaking, then the next day all my joints were painful and it hurt just getting dressed. My painful ankles made it so I couldn't walk without pain. The elbows and wrists made just turning around in bed painful. But nothing like nausea and stomach issues and all the chemo side effects. I was thinking to myself there is no way I can go through this every three weeks. Might as well be on chemo. But all the painful joints are already almost gone.
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Glad you are doing better, DazzlingEagle. Maybe the side effects will ease up, over time, after your body gets used to the drug. That happens sometimes. Keep us posted.
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Dazzlingeagle—. So glad your insurance approved Keytruda.
Do you get any other drugs with the IV Keytruda?
SE sound tough for sure. Really glad they didn’t last long Hoping Keytruda is kicking C’s butt and that your next scan will show improvement
You mentioned your dog earlier. What kind of dog do you have? We are talking about getting a dog
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There weren't any other meds, just the Keytruda.
Another round of side effects. Had to go to ER this morning for high fever and dehydration. They didn't find an infection source but my WBC was a little low. They let me go home though on oral antibiotics. Now on motrin for pain. Starting to feel better and ate dinner. My despair is definitely improving.
I have a small mix breed dog. Mostly schnauzer I think. She was 5 when I got her and already housebroken. I see a lot of "oodle" and golden doodle mixes and they are always so soft and cute. I think they are expensive though. There are so many dogs. That's really exciting.
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Dazzlingeagle—. Glad you are home from the ER.
Your dog sounds cute. My in-laws had schnauzers... 4 over the years.
We are having a new fence installed before we start looking for a dog or two.
Tomorrow is my checkup with breast surgeon
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Dazzlingeagle,
I hope the Keytruda does well for you, and you start feeling better soon.
Dodgersgirl, hope your visit goes good with the BS surgeon tomorrow.
Good vibes to all,
Vickki
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Had to go to the ER again with fever and joint pain. When I got to the ER, my blood pressure was 53. My top number is usually around 110. I was dehydrated again, even though I had been drinking a ton. They admitted me so I could get IV antibiotics and steroids and fluids. By the next day, I was already improving so the doctor said she would discharge me the next day. Then I woke up not being able to talk, sore throat and breathing hurt. I had respiratory therapy and treatment for thrush.
I also got a detailed pain management plan which is just basically how much of which pain reliever I can take, which is more than the prescribed dose, and at what time. I can also take Norco/hydrocodone at any point if needed, maximum of one every four hours, but so far I've been doing okay on Aleve and acetaminophen. This pain management has really worked for the past 20 hours or so I've been home. because before I was very sparingly taking just Tylenol because I was worried about anything impacting my kidneys.
I wish I would have had this earlier and when I called the M.O.s office several times this past week, I almost feel like they just thought I was a bother. To me being bedridden from pain for almost a week is what brought a lot of the other serious things on; also, I felt some of the time I was being blamed for getting dehydrated. One of the oncologists told me "Drink more and call the office immediately if you have a problem." Umm, hello? Please don't make me start a mental list of people to kill if I am still alive later in life. Joking, Joking, I can't even kill a bug in my house. But really really disgusting the way some doctors talk to patients.
My wonderful sister went through the discharge notes and made an easier to understand plan and then I am making a daily journal from that and marking every med off as I take it. I don't even know how many pills there are right now but I should be done with most of them within a week.
So I am still pretty sick but recovering fast and best of all pain free which makes everything so much better. The official diagnosis was acute kidney injury and leukopenia.
My oncologist is going to halve the Keytruda dose for the next cycle and gave me the choice of pushing back the next one by another week. I was relieved because I thought I might be off Keytruda already after one dose.
Oh, and it was still nothing compared to Chemo!
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Dazzlingeagle— oh my. You have had a tough week, for sure. Reading that pain is under control was good. Hope that continues.
When is your next scheduled Keytruda? Wonder if they can schedule you for floods via IV a few days after Keytruda? I have friends who did that with chemo to help stave off dehydration.
I hear you loud and clear about medical stuff implying it’s your fault when dehydration strikes. They did the same to my mom recently. And she must have literally had over 120 ounces of water. Argggg. Like we need that tone from medical people.
Regarding thrush, search BCO for pineapple. Someone posted recently that real pineapple rubbed inside the mouth as helping with thrush. I had good luck rinsing several times day with water, baking soda, and salt.
Hoping each day finds you stronger and feeling better.
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Every time I have any issues lately I’m given the “age related” answer. Not really sure exactly what that means but I guess it’s better than “it’s all in your head”. I’ve come to the conclusion that mostly they have no idea what’s going on. Funny I never had any of these problems before chemo and radiation but now I shuffle along like an old person. I do my best to keep moving
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Is anyone else experiencing muscle tightness? Not periodic spasms, but tight/sore muscles. My traps and rhomboids are so tight, and when I asked my MO about it she replied that this was a PT issue and unrelated to my AI. I know that joint issues are common SEs, but what about muscles? There was no mention about it in the package insert with my Rx. Thanks for your input.
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pink_is_my_colour- what side effects are you experiencing??
HersheyKiss— I hope someone here can help. My SEs from AIs are joint pain related.
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HersheyKiss, my thigh muscles hurt all the time when I was on anastrozole. I tried pain relievers & every muscle cream available but nothing helped. My MO didn't think my muscle pain was related to my AI but, after a year, suggested I take a 4 week "vacation" from the anastrozole. All my thigh pain vanished within days! (I then switched to exemestane & have remained pain-free!) Perhaps a different AI will resolve your problem, too. Good luck!
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Dodgers Girl: The left side where I had the lymph nodes taken out was painful to touch. No amount of pain relievers worked. Thought it might be nerve related. Talked to my Physician and she said to go for acupuncture. I went to my physio because she had done acupuncture before on me to see if she could do anything and she was hesitant to try anything for fear of lymphedema developing. She said she could try but no guarantee that it would work and suggested I go to a traditional Chinese medicine. So, I went home and put a heating pad on my neck and back every day for two weeks which has worked. Now that side is mostly pain free. But the muscle aches and joint pain limits how much I can do. If I sit too long when I get up it's like watching a drunken sailor stumble around. A friend of mine who is also on the same drug had the same issues. She went off the med for three months to see if it would make a difference and it didn't make any difference at all. Soooo, I guess it must be age related? Or it's a long term side effect of the drug which isn't going to go away even after stopping the drug? Now, I understand completely how old people end up falling. If I was in my 80s I might be okay with this but it's depressing because prior to chemo I was very active now I can barely move some days. It's a new normal and trying to get use to it. At least my brain is still working!
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Unless one has gone thru the nasty treatments, others have no idea about physical and psychological damages.
It took 15 mos for majority of pains dissipate. right now I do my darnedest to suck it up. I finally got to the point I say " my sleeve is my fashion statement" to those who have no idea what lymphedema is. I take only claritin, ativan, celexa, Arrrrrghmidex and thyroid meds. I am amazed that I can distingush all 5 pills with my eyes closed. I get in and out of flexitouch pump in 45 seconds.
psychological damage is another matter. I still get depressed occasionally whenever i see a cute baby. I simply cannot help it.
I plan to suck it up as long as I could because it truly was a divine intervention how I found about bilateral BC out of a blue sky. Going to ER due to incessant period bleeding followed by $4000.00 bill which briefly made me to postpone mammo. (I have had yrly mammos since my early 30s. All clean but not the last mammo)
I have to stand myself because I am waiting for my calling. Don't know when or what I just know it is coming.
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pink_is_my_colour: I can relate to the pain on cancer side. I wasn’t sure the pain I felt when wearing a bra would ever go away but over time, it has greatly improved. The pain was where nodes were removed and band on bra sat. So tender and painful.
My GP told me that lots of ladies have hysterectomies and don’t seem to have the painful joints I complain to her about. Finally, I asked her how many of these other ladies are also on AIs to remove all the estrogen from your body? Ahhhh she said that was a valid question. I have pretty severe joint pains in both hands. Some days I literally can’t pick things up or hold things. On those days, working is hard as I do computer work and the mouse and a pen are tough.
I do feel like I am 80 yo many days. It sucks.
But my mind works (except finding the right word) and for that I am grateful
I hope your pains lessen. And that the you in you memory can return.
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Castigame— great to hear from you.
Can you believe we are nearly 1 year beyond active treatment?
I am still on my class nicely trial drug. Still not sure if I am on chemo or placebo? I get mouth sores on and off and my fingers feel like they did on Taxol. But my blood numbers are all good, so not sure if I am taking chemo pills each day.
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Went to the orthopedic doc today about my feet. Guess what? Of course he says it’s tamoxifen related. But the good news is I don’t need custom insoles and there’s no sign of arthritis and I’m not flat footed. He actually told me to try a specific otc insole that’s only $20 and that it may help. I have long skinny feet and folks like me tend to need the extra support. So yay to not spending a fortune on insoles
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Hi, I thought I would stop by and give an update. Dazzling Eagle, I am hoping the keytruda is working with less side effects. This past year, I have been dealing with constant painful joints. Tendinitis that's seemed to move around. I finally switched orthopedics because I think the first one thought I was crazy. X-rays fine but lots of pain and hard to walk. I found a new one who said it was the aromatase inhibitors. Long story short, I am now getting Faslodex shots. With the exception of numbness and tingling in my arm, all my bone and joint pain is gone (except for arthritis pain) I am no longer stiff. My only side effects have been nausea and consitipation. Tarenee, yeah for the inexpensive insoles. I think of all of you everyday.
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Annbee- great to hear from you. I wondered how teaching was going especially if AIs cause SE for you.
Tell me about your Faslodex shots. Is that instead of a daily AI pills? Insurance covers?
Glad you found something that stopped the joint pain. Sounds great. Thanks for sharing
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