Starting chemo April 2023
Comments
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Apologies for not doing a great job keeping up these past few days. I postponed yoga yesterday because I wasn't feeling well. I was up during the night with an upset stomach and a headache the night before. I don't think either was chemo related. More likely allergies and dramatic changes in the barometric pressure we've had over the past week. I have a bunch of stressful things going on in real life unrelated to cancer that are taking up a bunch of energy and time.
catm: The rash I have is hives on my arms and legs. The oncologist told me to use a little lidocaine cream on them if they are itchy. Patches of dry skin started after the first chemo. I've been using Burt's Bees facial wipes a couple of times per day and was in much better shape when I was staying internally hydrated. I have to do a better job at that. I use Aveeno Baby lotion for the rest of my body and when that isn't doing enough, I pull out the Nivea Cocoa Butter. A friend of a friend sent a lovely note and a seat belt cushion when I first stated treatment. She mentioned that she cold capped and lost some of her hair but not so much that she had to wear a wig. I'm hopeful too!! But I have that straw hat just in case. :) So glad you got to have a normal night out. It feels so good to just live outside the cancer zone, even if only for a couple of hours.
Iamnobird: Love the idea of boxing female hares. That is just so funny and on so many levels. Agree with you on alternative medicine and giving some consideration to multiple paths. I really do think stress triggered my cancer. I don't know that it caused it but it sure did start growing quickly when I was under significant stress. This is one of the reasons I'm working on yoga and meditation. I added Radical Remission to the summer reading list! Thanks for the recommendation!
Wishing the Tuesday Club a smooth chemo today!! ❤️
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Good morning!
Iamnobird: Birdie: Thank you so much. Birdie really is very sweet and also is very social and funny! My daughter put a "see through" gate across the door to her bedroom to let George Klooney and Birdie "smell" each other. So far, there has been much posturing and spitting but I remain optimistic nonetheless as George has always lived with another cat, most recently in college "Mr. Blanco" an all white two year old sweetie. Stay tuned!
Iamnobird: Thanks for offering to connect my daughter with your friend. I am going to let her chill for a bit then we will revisit the real world. She studied in Amsterdam a year ago and that was pretty fantastic- also was super fun to visit her there.
njdogmom: I am so sorry to hear that you have had a lot of stress in addition to the BC stress. I think it is great that you are doing yoga and meditation. These are on my list to also start doing. I think my cancer might've also "taken off" (like we discussed) after taking care of my mom then settling her estate. I am a phone call away if you need to chat with a breastie and someone outside of all of it.
njdogmom: thanks for the moisturzing recommendations. Also, I downloaded the APP to chat but I wasn't successful yet logging in. I'll try again then text you etc if I have trouble.
Friday; Are we going to try to do a call?
Yes: also wishing the Tuesday Chemo Club a smooth day! My next chemo is next week.
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Top photo: my sons with my daughter in law
“George Klooney” action shot doing what he does best, looking handsome!
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Aw! What a good looking bunch of kids!
Yes. I can talk Friday! Cocktail hour here right, 6 pm Helsinki/12 eastern time?
Catm: I love that you are giving your daughter space to breath. It is all so stressful and they are so young. My oldest studied in the NL for a year, but in Middelberg. It was great as he was only 2 hours from Brussels where we were living. We actually thought we might go to The Hague for this posting, but ended up with Finland which is also great.NJ: I am so sorry that you aren’t feeling well and that you have so much going in in your life right now. I hope it can calm down a bit and that you can focus on you for a bit. I also had a lot of stress for the last several years. Chronic, ongoing and tough. So I do think there is something to that. I was so upset after the biopsy and diagnosis that I swear mine grew and turned cancerous them. I developed a vein on that breast that pointed directly to where the cancer ended up being. I was told the vein was likely from the biopsy, but it got worse and everything ached , especially my armpit where they found the cancerous node.
I am awake and feeling fine at the moment. I had an early start at 8:30 and it went so quickly. I was done by 1pm. But I was so, so groggy from the antihistamine this time. It hit me like a ton of bricks. I slept for a few hours when we got back, but am awake now and going to start dinner. I feel fine, but my nurse did emphasize that I should take the nausea pills preventively for the first 24-48 hours. She has seen folks with cumulative effects at this point. I also have a scratchy pointy stitch that didn’t dissolve and is sticking out of my new belt button. My onco nurse won’t dig to remove it because it looks a little deep and she wants my surgeon to do it. Which is fair enough but now I need to track my busy microsurgeon down. It is annoying because I suspect with the right tools it takes like 60 seconds.0 -
Hey all! Happy Wednesday. Feeling very steroid induced today:). Made chocolate banana muffins, cleaned stuff up for the cleaning lady tomorrow (ha) and am heading down to the hospital to meet my plastic surgeon who will remove the annoying stitch that didn’t dissolve. I also bought a new dress from the internet because apparently I can’t revisit online shopping. And I am trying to convince my husband to take me to dinner since I will be downtown. Not too tricky that;).
Anyways. I hope y’all are having a good day so far.
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Hi gals-
Iamnobird: thanks for kind words about my kids. They have all been wonderful. A silver lining during trying times.Glad you are getting that pesky stitch out. What a pain & added nuisance. Hope you get relief today & also a nice meal afterwards!
Speaking of…. Two of my daughters besties arrive in a few hours. My husband & I will take them out for a nice dinner. Im looking forward to that & very likely a good martini too!
njdogmom: hope you are feeling better physically & emotionally. I think it’s very interesting that we all had been under a tremendous amount of stress then wham, BC! It still shocks me. Iamnobird: the vein/arrow is kind of stunning & amazing, totally believe it. I feel like my armpit has ached ever since the positive lymph nod biopsy.Thanks for sharing your tumor experiences. I do think my primary one is doing strange things- flattening, so feels bigger? IDK
Hope you have good days. It’s pretty in ATL & thankfully a bit breezy.0 -
Hello!
@njdogmom Thinking of you and wishing you a good session and carboplatin today. I am hoping this week is treating you kindly.
Catm: I hope that you enjoyed your martini and what sounds like really lovely company. And yes, the vein was freaky. My husband could see it, but told me it was likely the biopsy or all of the poking and prodding. But every time I looked at it, I felt a huge sense of doom. It just seemed like something was really wrong.
My doc grabbed the super long pliers and had the stitch out in like 10 seconds. So I am all good and so glad to it have it poking me. She says my healing looks good although the scars aren’t fading so quickly now, which she says is due to the chemo. After I finish. I can use silicone tape to get them to become less red. Right now they are healed, but not fading. I got a funky new headcover today. They came from Bulgarian via Etsy. They are really soft and fit tightly so I think they will be great.
Otherwise, not much going down here at all.
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iamnobird and catm: Love the photos! Beautiful children, a lovely cat and a fantastic headcover! Time to do some shopping!
Iamnobird: glad you are healing, that the scars are fading and that your doctor is happy with your progress.
Shampoo recommendation from a friend who did chemo before there was such as thing as cold capping: She used Neutrogena T/GEL. I looked it up and it appears to be a dandruff shampoo for sensitive scalps. Not sure that I love the list of ingredients while cold capping. I think I'll stick with baby wash for my hair. If I ever do get to the point where I'm going to let it all go, I may try her recommendation. She said her hair no longer hurt after using it a couple of times.
My energy level really dropped over the past week. It wasn't great prior but this past week was harsh. Today's bloodwork showed some concerns. C02 is low, Amylase is high - just over the high end of normal and Lipase is really high - 122 where the high end of normal is 75 U/L. There was some question about if I would get Keytruda, the most likely culprit for these numbers. I saw the nurse practitioner today rather than the oncologist. The oncologist gave the okay on Keytruda for today but I wasn't able to get a clear picture of what's going on and what the short and long term implications are. I'll be seeing the oncologist next week. It took about 3 hours from the blood draw until the infusion actually started. Long week. Long day.
I look forward to chatting in teamspeak with both of you tomorrow at noon eastern. Right now teamspeak is the only solution that I have that will cover free international calls. I'll give catm a call in a little while to help her get set up. Teamspeak is like old fashioned party lines. Everyone in a particular room can hear and speak - even speak over each other. Because I rent that server, you guys can use it to chat whenever you'd like. It should be up 24/7. I'll make you administrators when you log in.
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Hello! I plan to be there!
NJ: I am sorry to hear about your blood work. I hope that you can get some clarity on that moving forward. I know that is super anxiety producing.
So today, I definitely am feeling not great. And my food has no taste. I just made some egg fried rice and it tastes like a bunch of nothing. Sounds like a fab new chemo milestone. I’ve been in bed most of the day.I am looking forward to chatting soon.
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Good morning!
Thanks for kind words about my family and photos. Iamnobird: :LOVE the headwrap and think you look so good in it! I'll probably have to go take a look on that website you look so good!
Iamnobird: I could use a couple of synthetic wigs/head wraps at the ready. What are your favorite Etsy stores?
I really enjoyed our chat yesterday and njdogmom, thanks for organizing and getting us setup. I think the setup you did was great!
I appreciate you both being open about your symptoms and struggles. It helps me so very much.
Speaking of….. the side effect I am struggling with the most (chatted about) is doing MUCH better. I hopefully have found the right mix of this and that in my, eh hem, yes, can't resist, "arse-enal". Ooof.
Dr. Park (from Vandy) emailed me last night to let me know that Vandy ran their own pathology on the first tumor biopsy obtained here in Atlanta. Their pathology showed that the primary tumor has a small amount of HER2- so Dr. Park has recommended 4 total treatments of TCHP then 4 treatments of AC. I am glad we will all be doing this together. I was, of course, taken a bit aback at first, but I am wrapping my head around it. You both get it.
It's a pretty day in ATL. My daughter's friends are here one more night and there's talk of watching "Mama Mia" tonight. They wanted to make it \ "girls only" but I can tell my "guy's guy" husband wants to be a part of the hen party- I guess he has some FOMO!
Hope you both are feeling better.
Sending hugs!
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Imanobird: What about using Strataderm scar therapy cream on the scars? I've been using it on an area near a biopsy site. I didn't ask the oncologist about it but I will on wednseday. It's good stuff!
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*Iamnobird ( was typing too fast!)
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Cat: I was so happy to chat with y’all as well. And I am happy to hear that you are feeling better today! That is great. And I can’t help but crack up at arsenal. Wow. That is some news from Vanderbilt. That does track with what my doc says. I guess that they learn more and more that tumors and their metastases can actually be made up of totally different large. So if a biopsy gets part of a tumor, it might be part with high estrogen and HER2- while another section can have a different biology. It is crazy. But they don’t know which parts send cells out to hide so treating everything yields the best results. While fascinating, I would be okay not being part of a science experiment. Although I am so thankful for modern meds.
Anyways. I can’t tell you how much better I feel having you and NJ along. I think I start the EC (pretty much same as AC but used in Europe) just a tiny bit before NJ does. So I can tell y’all all about it. I am keeping the faith that it can be managed nowadays with the good meds they have.
I tend to deal with stress by shopping. And I have absolutely overbought headcovers and wigs. Urgh. I shampooed today though which I don’t do that often and it was quite a shed. It is funny how calm I am about it now. It seems somehow less traumatic to lose it slowly like this. We will see what happens. The last one PepiZ ships from Bulgaria and it takes forever. I like her hats because they are a bit funky and fun and make me feel less old lady. but she was seriously so slow.
I do have some Mederma overnight scar cream that I use. But I think the chemo might be interfering. They were fading really well before I started.
Enjoy Mama Mia!
NJ: Thinking of you today and hoping you are feeling well and enjoying your weekend. I am so glad you found somebody who can take your pups if necessary. I know that had to have been a stressor for you. I am also hoping that your bloodwork improves next week.Okay. We scored some tamales at the Mexican grocery store so that is dinner! Hurrah. I haven’t been super into the taste of wine (is this even me?) but might have a little glass before dinner. Then we are also doing a movie night. A Spider-Man one apparently. Um, goodie. Ha.
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It was a pleasure chatting yesterday and is such a comfort having your support iamnobird and catm! Having friends who understand the monotony of plowing through a treatment plan while at the same time living on the emotional roller coaster we ride is everything.
Catm: So glad you're finding the right balance of supporting meds and foods to ease the issue. I'm thankful Dr. Park went the extra mile with the pathology and found your HER2 low. I didn't realize that a single tumor could have a combination of pathologies.
Iamnobird: I second the motion on being a part of a science experiment!
I continue to shed. I can no loner just blame the dogs for the hair on the floor. I still have eyelashes and eyebrows which aren't impacted by scalp cooling so I'm thinking the real shedding hasn't taken place yet. I'm also not very stressed about it. I've come to accept that things will change, especially when I start AC. I really need one of those very cool head coverings that iamnobird modeled for us!
My neighbors are getting together to play Mexican train dominoes this evening. They may have to remind me how to play. In fact they may have to remind me several times over the course of the evening given my concentration issues.
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Hi gals,
Checking in with you and reading your posts ALWAYS lifts my spirits! You'll be glad to know that per the book Iamnobird is reading (and I then also bought, too, as I apparently also deal with stress by shopping) ("Radical Remission") that having our little support group will greatly help us to beat this "c"! So while we unwittingly all became part of a science experiment (love that Bird), we also found each other which is going to help with our treatments and cures. I truly believe this!
My "bad" side effect kicked up again. Not sure if RX pain pills are ok so tonight it will be one or two martinis to help with the pain- here too I am serious! I think the rest of the week will be dry with chemo Wed.
Ah, gals, let the shed begin! Yep, started yesterday for me. I'm not too freaked out about it either.
Ok. hope you both are having a good weekend and are feeling ok. I'm dashing off to dinner with hubby and 2 of my kids.
Hugs
Cat
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Good morning! I have started responding to this like 4 times and then my draft vanishes. Grrrr! Anyways. Here we go.
Cat: I am sorry to hear that your side effect has returned. That sounds beyond awful. I hope that they can either go ahead with surgery or maybe take a break between chemo cycles and do it. I totally don’t like the taste of alcohol which is really weird. I can taste salty or sweet or spicy. Everything else is a bit bland and metallic. I think you are absolutely right.
I am so thankful to have our little support group. There is comfort and safety in doing this together.
NJ: It sounds like you have a fun neighborhood! Have you lived there long? My husband and I talk a lot about figuring out where we want to retire to and buying a house so we can start to build connections with neighbors I think it will be so important as we get older to have those relationships. We haven’t decided if we retire to the states or not, and which part of the US. We thought maybe Asheville, NC, but decided it is too warm there for us. So we are now thinking Washington state.So, the Secretary of State is here this week and my husband is insanely busy. He will drive us to chemo tomorrow but my son is going to stay with me. I react a lot to the antihistamines and get SO sleepy. I actually stay in a bed and sleep the whole time and am often still a bit woozy when I leave. So Ethan will help me get to the bathroom safely (so many liquids, I am always going) and home using Uber. Lucky kiddo. It feels a little weird to be so vulnerable, but he might find it reassuringly non scary.
Chris is heading to work today, but we are going for lunch to my favorite seafood spot first. So yay! The salmon is so good here! Oysters too, but I am not eating them for obvious reasons.
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You both always lift my spirits too! So thankful for your company on this journey.
cat: Bummed that your side effect is rearing it's ugly head. (puns intended for your entertainment) Fingers crossed that you can solve the issue directly or with the assist of meds.
iamnobird: You'd think these politicians would cut you some slack! The nurses are glad to help get you to the rest room. We're a bunch of fall hazards waiting to happen. :) Lucky kiddo gets to be helpful and do something meaningful for his mom on her path back to being healthy. Sounds like a good thing!
Regarding supportive neighbors, I didn't really know any of these people until I became a dog mom. Who can resist a new puppy? I got to know several of them a bit better while helping to care for a neighbor who had leukemia and went through treatment over the past few years. During lockdown, one of our older neighbors was feeling isolated and depressed so I started hosting cornhole socials out on the lawn so that she'd have something to look forward to each week and so that our neighbor with leukemia would have socially distanced social engagement when she felt up to it. I probably won't stay here through retirement. I'm thinking a 55 and older community and a condo that is all on one level would be good. A year ago I was fine running baskets of laundry from the basement up to the second floor but now I am exhausted and have to do it in phases. I've lived here for 10 years. The support network is a bunch of single and widowed women. I think they get it because they also live alone.
Other stuff:
The dental issue with an implant has self-resolved. I won't need surgery to remove it because the whole damned thing fell out last night. Who would have thought a chopped salad would prevent the need for surgery? I called the dentist's emergency number and he got back to me within 10 minutes. He'll see me first thing Tuesday morning. There is an infection risk right now. He suggested I get an antibiotic Rx from the oncologist.
Since starting chemo I've limited drinking to a glass of wine per week as my ritual wind down into "I don't do cancer on weekends." I wasn't much of a drinker prior - I occasionally had 2 glasses of wine on a Friday night. The more I read on the topic, the more I'm thinking I could do without the libations. I'm concerned about liver and kidney function given the recent changes in my bloodwork. I was thinking about how hard our bodies are working to clear all the chemo and then I'm limiting their function and giving them more work to do with alcohol. My bottles of Freakshow Zinf may need to wait until after chemo.
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Hello there!
NJ: Oof. So sorry about the implant. Hopefully it all fixed up for you now. So is it the chemo? It can just make stuff fall out? I agree with you on the alcohol. I drank several drinks a week before cancer. We had wine with dinner, drinks on weekends with friends. I was always a moderate drinker (well under 1 drink a day threshold, but that can definitely be too much according to all of the data. So now I have 1-2 a week. For me right now, I think that is an acceptable compromise but I will cut it out if any of my liver values show issues. You are so right. Our bodies need as much healthy support right now as possible and this is an easy one. Lots of alcohol free options here.Finished treatment and the antihistamine knocked me out completely. It is insane how that works. I slept for a few hours and am good now. A friend from our time in Beijing is traveling and in Helsinki for the week. I am supposed to meet her for a walk and lunch on an island tomorrow. Hopefully my ambition isn’t bigger than my stamina 🤣. Usually Wednesday is a good day for me.
I need a new dentist here. I had gone lucky a couple of months before the cancer stuff for cleaning and X-rays. But I really didn’t like the dentist or the clinic in general. It felt really corporate. I loved my dentist in Vienna so that makes me sad. I will try some other options.
It does make me sad how hard treatment is on our bodies. Chemo is breaking all of these things that I took for granted like shiny hair, good skin, a good immune system. I am hoping it is also breaking cancer cells. But I really hope I can find the old me afterwards.
Cat: Thinking of you! Do you do treatment this time in Atlanta? Is your oncologist there good with working with Dr. Park’s recommendations? You have a lot of folks to coordinate!
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Hi gals,
Apologies for being AWOL a couple of days. Today in particular I was super busy pivoting to more appointments (Vanderbilt and MDA) with the new interloper: HER2- with her equally unwelcome BFF HER+ still a part of the dance party in the same tumor.
I finally called the dr on duty (was actally a PA) yesterday about taking an RX painpill. I took just one pain pill and it really helped me with the bummer of a side effect. (Yes njdog, love all of these puns!) Chemo tomorrow 9:00 a m in Atlanta. Funny enough, I was just thinking about the bathroom issue! I went A LOT at MDA and it wasn't that big of an issue BUT I'll now have the Dignicap on (like dragging around a square R2D2 by your head) and I think it needs to be unplugged/taken off each time. I have some Depends from my mom so threw those in the bag. And Bird, OF COURSE I just found a promising product on Amazon ("TravelJane"- 7:00 am-11:00 am delivery tomorrow! My daughter may need to deliver them.)
Bird: Love that your son went with you today and I hope that it all went well. Funny, when my son went with me to MDA, it was a really special and bonding experience. I don't think I am being given Benadryl with my infusions but i didnt have a reaction first time. I'll ask tomorrow. My oncol teams seem to all be ok working together but all the coordination is very tiring, but thankful for many smart, caring people on my teams.
Here's a funny from dinner tonight:
Daughter: "What's the name of you oncologist here"
Me: "Dr. Hazen" (not real name as I'm about to mention more)
Daughter: "Wait, is that Helen's (not real name) mom?"
Me: "No idea"
Daughter: "Yes it is her mom. Were good friends in HS and we traveled together!" HA!
njdog: that's pretty wild about your inplant. I'm glad you are getting antibiotics. Wonder if a mouth wash might help too to keep it clean. Love the cornhole game you organized and totally agree too that dogs/puppies are so awesome in general and to meet neighbors.
Went to bridge today. These ladies are all so nice and genuine. They all sanitized their hands between deals and then gave me a dinner for tonight and 3 for the freezer. They just did it! It was a beautiful gift from women I know but am really just getting to know.
Sorry if I already posted part of this. I DO have chemo brain going on so I copied & pasted not thinking where I was typing (off of posts from the beginning) was carrying over to the most recent.
Alcohol: I was previously over the past few years not drinking moderaely. I am trying now and am much improved but still can do better- prob 6 drinks last week? My new mantra is "drinks are only for weekends" (with some exceptions of course) and I am going to try hard to keep it at 4 a week. I agree about the toll on the liver and to keep watch on this as it relates to any amount of alcohol.
I am sad about how this breaks down our bodies too. I try to remember a post I read. 'This isn't our bodies breaking down, this is us winning because the cells are fighting the cancer'. Honestly doesn't help all the time, but sometimes.
OK, unlike MDA (IV Steroids), the ATL dr had me take steroids orally today. I am wide awake. Oof.
Sending hugs,
Cat
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I am up as well. At a steroid fueled 5:30 am. Yippee. But I slept like a rock last night so there is that. Meeting my friend at 11 so I should still be a bit energized. I hope. Then I get the afternoon to rest.
Cat: Thinking of you today and hoping that all goes smoothly! Yeah. Bathroom breaks are a pain, but they give us SO many liquids that we really have no choice. Plus, the ice water I chug doesn’t help with that aspect. I am so glad you called and got permission for painkillers. Hopefully that helps from here on out. And what a lovely gift from the bridge ladies. Food is so useful! So, for Europe we have a large freezer as we have a US style double sided fridge/freezer. You can actually fit stuff in there. It is SO different from Vienna where I swear the freezer fit like 4 things. But because if it’s size, it is the only one we have. We have had 2 provided at previous posts. So my ability to store too many freezer meals is a challenge. Like Jenga. So, if I understand right, you are essentially being treated like a combo of me and NJ. With the targeted therapy for HER2+, but the AC to work on any triple negative stuff (it also apparently works on any random hormone positive stuff in my case). They actually suspect my estrogen is likely higher than the little tumor indicated, which is why he is keen on the hormone blockers. And the Nerlynx, (taken a year after the Herceptin) which only has value if you are hormone positive. But it sounds like the side effects can be brutal. I’ll try it I think. Because it crosses the brain barrier and offers some lifetime protection there. But diarrhea and lots of it is a major side effect and having a year of diarrhea after finishing all of this other stuff isn’t so appealing.
My husband and I are planning a little couples getaway 2 weeks from now. Just a night or so away from pets and kids and house stuff. I think we are going to a sustainable eco resort with a nice little restaurant just an hour or so from here. We can hike a bit if we want on their trails or just relax. Fingers crossed I will still be feeling as well on the weekend as I have been so far. It is so hard to predict this stuff.0 -
Good morning ladies! Chemo # 8 tomorrow. (I think it's officially cycle 3, day 8) so I'll be joining the steroid buzz club this evening.
catm: Glad you are okay and great that you were able to take pain meds. As if all of the rest of the stuff we are dealing with wasn't enough, having pain related to side effects is unthinkable. My heart goes out to you. I can't imagine coordinating all of those medical teams. It sounds like yet another full time job. Small world regarding the connectedness of your daughter to your medical team. Very cool! And great that the bridge buddies made so many meals for you! There are days when we just don't have the energy to cook and take out gets old fast.
Iamnobird: A weekend couples trip sounds fun and relaxing. You've been missing travel and it sounds like it wouldn't be overwhelming being just an hour away. A fresh experience can be rejuvenating. I look forward to seeing the photos!
I got a weird call yesterday from a third party company that my employer uses for healthy lifestyle coaching and other services. It seemed a bit odd since it was unsolicited. The caller pulled a nurse into the call and they clearly had access to some of my medical stuff. They wanted to offer assistance in the form of a nurse advocate and to provide any information that I need regarding services available to me. I'm feeling a bit overwhelmed. They have a follow up scheduled with me today. Have to think through how I want to handle this. I'm honestly finding it intrusive and annoying.
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Well here's the answer
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NJ: Aetna assigned me a care nurse that checks in on me. And they connected me with a dietician and helped me get the second opinion from Cleveland Clinic. I get being totally taken aback when contacted like that out of the blue though. I just gave her some basic info, asked to be connected to the nutritionist. I might ask to talk to a fitness person as well. I’d like a chemo exercise program of sorts maybe. I often just tell her that I don’t need anything. And I asked for all contact to be via email as I hate random phone calls.
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Nj: Thinking of you tomorrow. And hoping that your blood work is good and that there is carboplatin.
Cat: Hoping all went okay for you today!
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Chemo was uneventful. Thankful that Carboplatin was available. Met with the oncologist and discussed elevated Lipase and Amylase. She added a retest of those for today so we can monitor more closely. Last numbers were pre-Keytruda infusion so day 22 post Keytruda and were mildly elevated. Today would be day 8 post Keytruda. Both were back within normal range. Not sure if that was a fluke or if these numbers will rise over the coming weeks. We'll keep a watchful eye. Lots of numbers flagged as low this week. WBC and RBC and etc. etc. Many of them are just below normal.
We also talked about potential long term side effects of all of these chemo drugs and especially immunotherapy. Her take was that we monitor very closely throughout the process and we monitor closely for the rest of our lives. If anything comes up, we take action. This is a balancing act. Saving our life and dealing with side effects. I'm comfortable with her feedback. I got a referral to a Rhumatologist to discuss a long term autoimmune condition - granuloma annulare, potential underlying causes and any concerns there might be re: immunotherapy. Good to have another voice in the mix. The oncologist was in agreement. Her general take is that more brains and more voices lead to better patient outcomes. ❤️
Iamnobird: thanks for the comments re: insurance people reaching out. It was alarming.
I look forward to chatting tomorrow!
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Hello all!
I hope that everyone is still feeling okay. I am doing fine still and have had a nice weekend. We are going to a neighborhood barbecue this afternoon. The weather is less than stellar. Still windy and a bit cold, but what can you do ?! We have been pretty lucky for the last several weeks.Do you all take probiotics? They were okayed by my oncologist and I think they have been really good for my digestive stuff. They also apparently might help prevent c-dif, which has been problematic for some folks on chemo. I am hoping they are the secret to having more digestive harmony (if possible) as we move through this stuff. I am having hot flashes and night sweats constantly, which really isn’t fun. I have been ordering off Amazon (y’all. I order SO much stuff after reading product recommendations) and I like my brand. I just ordered a bunch of cream of wheat because folks say they find it is one thing that speaks during the AC. I think I feel that if I can just have the right stuff at home, it will protect me from the side effects. I was like this during Covid as well. I totally bought all of the canned fruit and pasta when it was gearing up. Not at hoarder levels and thankfully toilet paper shortages and stuff weren’t a thing in Austria. They call food hoarding “hamsterkaufen”, hamster buying because it is like a hamster frantically stuffing its cheeks with food. That is essentially what I am up to.
Anyways. Not much else here. I just wanted to check in and see how everyone is feeling.
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Hi gals,
I hope "third time is a charm" because this is now my third attempt at getting my post out. It has disappeared on me and I am sure the issue is with me- chemo head.
Great talking on Friday and apologies for being a bit AWOL. Side effects from Wed chemo hit me hard (in and out of the tub 4:00 am-9:00 am, then a pain pill, then a massive nap)- I do think the pain pill helps a lot to get it under control and I am being much more proactive/aware of that particular side effect so that is improving.
Bird: Yes, I think your assessment of my proposed new treatment plan is correct, much like your ER+ add on. I do think it makes sense so long as the AC/EC is better understood now. Sorry about the Nerlynx- sounds like an ordeal on top of an ordeal- ugh!
And….. they're off! Lost half my eyebrows yesterday- so weird.
Posting what I've typed so far!
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njdog: Agree with your concern over the insurance company call and also agree with Bird that if possible, contact by email only. I re-read the statement 3 times and what a bunch of mumbo jumbo. There could be value in this but I would proceed with caution.
I talked to my dietician about probiotics (and I think I will make a note to revisit this). Anyway, I am trying to get probiotics daily either with a greek yogurt or a Kombucha (I think there are probiotics in those?)- I believe the dietician said do one or the other if possible daily.
Bird: I am out of control with Amazon! It sparks joy for me to see "something promising" etc and then, poof!, magic, it shows up! I'd guess I order 3 things a day.
Hope you both are feeling ok and Bird, hope the BBQ was fun!
Sending hugs!
Cat
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Good morning all! It was fun chatting on Friday. Always so thankful to have you ladies as friends!
I should have asked my oncologist about probiotics since Kefer is normally on my shopping list. I'll ask her this week. If she says no, ooops! Too late!
Sorry that you had a tough chemo week catm and I'm glad the pain meds help.
How was the bbq iamnobird? Are your weekend away plans still a go?
I spent most of Saturday in bed. I think it's the most I've slept since I started chemo. I got up a couple of times to take care of the dogs but aside from that, I was a zombie. Sunday was a bit better. Several long naps but at least I was up for a couple of hours at a time.
When I was first diagnosed, I watched tons of videos on what people pack in their chemo bags and I had amazon boxes showing up in my garage several times per week. Preggie pops, Gin Gins, a backpack with an insulated section for frozen water bottles, coloring books etc. The Gin-gins were a great find! Not that I need them but I like them. :) I've slowed down a bit with ordering stuff because I haven't used the things I ordered back in February. I switched back to my Vera Bradley backpack because the colorful pattern makes me smile and I never got interested in the coloring books. Lately I've only been ordering things like Epsom salts.
It's chilly here this morning. I'm wearing a hoodie in the house! I hope it warms up a bit and that my energy level picks up. I'm supposed to have lunch with an infusion buddy and her sister-in-law who is also in chemo. Her sister-in-law is struggling with depression. We were planning on an outdoor lunch at a local Inn and then a drop off of sweet potato fries to the infusion nurses.
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Cat: Oh no to the eyebrows! That sounds like a surprise. Luckily there are lots of options for recreating them. I bought some eyebrow stamps that I am hoping I can manage if/when necessary. I also try to get some Greek yogurt in my system. I hope that you are feeling better today. Your regimen is a tough one so definitely be gentle on yourself. I am glad that the pain pills are keeping stuff under control.
NJ: The BBQ was nice. And it is so cold here! Today was a bit warmer, but it has been windy and chilly. I think the weather looks good though next weekend so I am thinking we will do our getaway. I’m sleeping terribly lately. Up at 3-4 and end up reading a bit and going back to sleep. I think it is hormonal, hand in hand, with the hot flashes and night sweats. Menopause coming for me! I hope you enjoy your lunch. I have a ton of gin gins that a friend sent in a care package. And ginger tea. Neither has appealed so far, but maybe next round. Enjoy your day! How lovely that you are bringing snacks to your nurses.
I did my blood work and a bunch of grocery shopping. I also made several baggies of marinades and chunked some chicken breasts in them and froze them. This makes easy grilled dinners with veggies and salad. Now me and my nap buddy are resting a bit. She has always slept like this. It was horrifying when she was tiny because you would find her like this on the floor and think something had happened to her.
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