Starting chemo April 2023
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Good mornings!
Welcome Cancerian! I have my first chemo treatment 5/9 so we are having our first chemo treatments back to back with each other. My "c" is slightly different ER/PR- and HER2+. chemo first, then mastectomy. I DID rent the Penguin cool cap system. It is complicated! A friend used it and had success so stay tuned. I also (per my oncologist at MD Anderson) bought Elasto Gel booties and mitts.
Iamnobird- I am thankful for the port going in tomorrow. I am a "hard stick" so i think this will be a good thing and I am grateful for modern medicine! Weirdly enough, my mother (recently passed away at 84) had a port for infusions and she said it was great. Kind of a weird share but I am thinking of her as I get mine tomorrow.
Iamnobird: My list of supplies is pretty much the same. I also read disposable wipes are nice to have ready. i also read that sucking on ice chips during the treatment can help with mouth sores. A nurse also told me that taking Claratin (loratadine?) before treatment helps some people with the leg soreness. Another friend recommended "Biolyte" to sip during and after treatment, not sure you can get in Finland.
njdogmom: I love your style! Loved how you dodged the nosey neighbor!
I have a funeral this am and was thinking about taking my own car (separate from my husband) so that i could DASH after the service and avoid friends I haven't seen who will likely pepper me with more questions. I'm still deciding.
Hope everyone has a wonderful day!
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Welcome Cancerian! So sorry that you are here and thankful for your company.
Iamnobird -
Thanks so much for the excellent tips! I haven't been keeping up with moisturizing. I have to get better at that. You're inspiring me!
I checked with the oncologist at my appointment last week regarding epsom salt baths and she gave me the green light. I think magnesium is absorbed through the skin hence asking her.
I've been using a soft tooth brush, a waterpik and alcohol free mouth rinse. I have an Rx toothpaste from my hygienist. Dry mouth has been an issue for me. My oncologist approved - thought it was great. Baking soda and salt makes lots of sense. I'll try switching to that.
I think we're both on track with reaching out to our dieticians/nutritionists. I've been eating lighter, smaller meals. More like 5 healthy snacks than three meals. Yogurt and fresh berries is often one of them.
Before starting chemo, I made a large pot of chicken soup and froze it in small portions. I've already exhausted the supply so will make another pot this week. It's nourishing, hydrating and an easy meal when I get home on chemo days.
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Hello all!
Thank you for sharing your health tips. I love the chicken soup idea and appreciate that you asked about magnesium. I also bought some Claritin from Amazon today to have it ready. This is pretty unique to Finland, but we do have a nice Finnish sauna in our house and I got permission to use it again. I had stopped after my surgery as it didn’t seem like a good idea with my healing wounds. I really find it calming though and it seems like it might be good during treatment. With a ton of water and at a lower temp than normal of course.I had infusion 2 today and came right home and crashed for a bit. All good though. I brought American chocolate chip cookies to share with my doc and the pharmacist and nurses and everyone took them and seemed happy. That made me happy so I think I will try to do it again when I am up to it. I made an appointment to cut my hair short this weekend. Gulp. Hopefully I will be feeling well.
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Sorry. I posted too soon. Anyways. My oncologist and I had a long conversation and we both showed our research lol. While I am still concerned about the heart effect of the meds, I do think he has chosen the plan that he really thinks is most effective. He said that doing 12 weeks of Paclitaxel and the PHESGO is still an option if it is what I want. And that it might be enough. But that his plan has a very high PCR rate, and he is concerned about eliminating the Estrogen + receptors as well as the HER2 ones. With my cancer being both positive, it means both cells can be active, giving me a chance of early recurrence and late recurrence. We have agreed on extra, ultra sensitive heart monitoring and stopping the EC if there are any signs of heart issues.
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I hadn't heard about Claritin. I'll add it to the list!
Iamnobird - The sauna sounds magical! Let us know if you're finding it helpful. I'm glad your oncologist is accounting for your heart health concerns and that he is also open to reviewing your research. A friend who has metastatic breast cancer pointed me to natera.com. She's looking into that as an option for monitoring her cancer. It's on my list of things to look into and I mentioned interest in it to my oncologist.
catm - Let us know how your port placement went. So thankful to have one given the long infusion path I'm on. It felt weird for a couple days after the surgery but at this point, the only time I'm aware of it is when I'm backing my car up and am looking over my shoulder. It doesn't hurt - I just notice it. A friend sent a snuggly flannel port pillow for my seat belt. I love it and have it attached all the time.
I started looking into yoga yesterday. I used to love yoga class when I was in my 20s. 😆 I'll set reasonable goals that focus on healing and calmness.
T'was the night before chemo and all through the pharmacy … What rhymes with pharmacy? Fingers crossed that they have carboplatin for me tomorrow. I stress quite a bit over this. On a brighter note, I used to be able to feel my tumor all the time and I am no longer able to feel it when I have a bra on. I think it's shrinking.
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njdogmom: That is great news on tumor shrinking! It must be a great feeling to know that you are making a difference. And I hope all goes smoothly tomorrow and that they have carboplatin for your treatment. I love yoga. I am not great at it, clunky and far from nimble, but it is so relaxing to me. Last year, my husband actually worked in Baghdad most of the year while we stayed in Vienna. I joined a salon near my house and it saved my sanity. I was a big fan of restorative yoga and did it weekly. Basically just forced relaxation and meditating.
Catm- I hope port installation went well and that you are avoiding friends that only want to chat about the big C. 🤣🤣
Not much here. I’ve been on a steroid high all day and did all sorts of tidying and laundry and dog walking and everything. Now I am crashing. My mood usually crashes as well, which is the hard part. I feel almost manic. I bought like 4 more cute headscarves and 2 new wigs off of Etsy today. I mostly have fun ones that are pink, purple, etc. But I plan to visit the proper wig store as well. Maybe next week. I am cutting my hair this weekend. I’ve never ever had short hair before so trying to view it as a new experience.0 -
Good morning!
Port placement went well- but the doctor placed it pretty far up around my neck/touching the collarbone. I thought my mother's was more on her chest area. njdogmom- where is yours? also, it occurred to me last night that I better make sure MD Anderson is ok with this port as they didn't put it in (no time before next week). I've sent a message to the oncologist there. It's always something right?
njdogmom- Hope your treatment goes well today and that they have the carboplatin. also, a friend recommended wigs.com to me- try at home then ship back the returns. Haven't tried yet. Would love to hear how your day went and how you are doing.
My daughter is home from college for a couple of days. She was so upset at first with my "news" (was waiting for her to finish exams) but she is doing much better today/yesterday.
Iamnobird: Glad your second treatment went well and I hope you are still feeling reasonably ok? Pls let me know if you need me to ship you a box of chemo-care from the USA. I truly would be happy to do so.
Here are some other products the nutritionist recommended to me; Liquid IV, Nunn electrolyte tablets, Healios (pricey) for mouth sours, Queasey Pops (bought all on Amazon).
I'm navigating "c" talk better with friends. I'm not answering calls right now but am doing better texting and emailing, part of this has been because it has been a super busy time traveling, figuring out the plan, daughter home and then hitting the road again Friday. I'll be ready to chat in a week or so.
Hope you all have as good a day as possible!
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Hi Catm,
Glad your port placement went well. I had an incision up by my collar bone (I think they use that one to guide the tube to the vein) and another that is above my port, four fingers below my neck. The port is tucked below the lower of the two incisions. The port is above my breast - more or less level with my armpit and about 4 fingers away from it. I hope that helps! I can send a photo if that would ease your stress. Just let me know!
As we said in earlier posts, our oncology teams are amazing and the infusion nurses are angels! I can't imagine that you'd have a port that MD Anderson isn't well versed in. Let us know what they say.
Glad that your daughter is adjusting and that you are setting boundaries with all of the friends and phone calls. Anything that helps you stay calm and in healing mode is helpful.
Iamnobird,
I hear you on the crash when the steroids wear off. I start pre-meds this evening with steroids and then get more during the infusion. I come home from chemo wired and then crash over the following several days. I attend to this with naps. Naps are a wonderful thing.
I haven't gotten any fun wigs yet but am totally up for it. I hope the haircut feels empowering for you. I felt like I was adjusting and reinventing myself.
For yoga - I'll be clunky and out of shape. I look forward to that peaceful state of focus. Just breathing for the sake and joy of breathing. I think it will help me though the coming months. Will keep you posted and I hope you get to practice while in Finland!
Reindeer, Saunas and now, Baghdad. You are such an interesting person leading a fascinating and complex life, iamnobird!
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Catm - sent a photo of my port scars in messages. Let me know if you got it.
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Stopping by as a cheerleader for all the ladies here in chemo. You’re all fantastic and you’re all strong and you’re all gonna get to the finish line. I think about you all everyday. I think of you every time I look in the mirror and see my hair coming back in. I think of you when I’m on my long walks to hopefully reduce my risk of recurrence. I’m thinking of you all because you are me and I am you. Hugs to all of you!
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Hugs to you jh40! Stopping in to cheer us on speaks volumes about who you are as a person and sets a fine example for us to cheer on the ladies who follow us on this journey. Heartfelt thanks.
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jh40: Thank you so much for that lovely and inspiring message. It gives me hope that we will be in your situation someday, offering hope and comfort to others. I think our diagnoses are quite similar as well. Unfortunately, I had enough cells in there to classify as a full metastasis so it bumped me up a stage.
Njdogmom: I am thinking of you today and hoping that all goes well and smoothly. And that there is Carboplatin. As I am sure that it will. I have crashed today and am just tired. Not overly emotional yet, but likely by this afternoon. It helps me to know why I feel like this. Otherwise, I feel pretty good. A friend is coming to walk me and bring dinner so that is nice. My cancer hospital will use Signatara to monitor if I opt to do so, but my doctor has said that the question remains as to what you do if you know there are cancer cells, but have taken all of the treatment options. He said it is something to think about when we decide whether to use that test or not. I guess that is the challenge. Unfortunately, with HER2+, there isn’t a reliable Oncotype DX type of test for aggressiveness so they can’t calibrate chemo quite as carefully. There is an early prototype of one for HER2+, but it doesn’t have a lot of proven success yet. It would be nice to know whether mine is super aggressive and prone to recurrence or not. They just assume all HER2+ is, which is a safe assumption, but means a certain percentage of folks are over treated.
Catm: I am glad that your daughter is processing and handling it all. My oldest son literally arrived on a plane for a visit like 2 hours after they called and gave me my DCIS diagnosis. I was a hysterical mess. Like looking back, that was such a good diagnosis. It is all relative, right?. Anyways. My 16 year old daughter had the hardest time with the diagnosis, my sons both seemed to both seem to take it in stride. And you are the sweetest for offering to send US goodies. Fortunately, US mail privileges are one of the perks of the diplomatic life. So I have ordered a ton of goodies from Amazon and other places. Probably a lot of stuff I might not use, but am operating on better safe than sorry. Stuff takes a couple of weeks to arrive so I try to anticipate. I could probably go into pharmaceutical sales with leftover stuff as I might have bought for side effects that I won’t experience.
Okay. I am going to get dressed and move about a bit before likely crashing on a sofa and watching TV. I hope everyone has a good day!
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Good morning!
jh40: Thank you for your kind words and encouragement. I hope to pay it forward as well!
njdogmom: Thanks for your port photo. I didn't realize we could share photos so that is nice. My port is up around my neck, where a collar type necklace would hit. I am not happy with the placement but there are bigger things to worry about. MDA will do an x-ray Tuesday morning of the port prior to the treatment and I am sure it will all be well.
Iamnobird; I am also HER2+ so I appreciate your sharing on the DX front.
I am encouraged to hear that you both are "hanging in there" after your treatments. I am anxious to get the first one (this Tuesday) over and done with. Nausea is my biggest concern.
njdogmom: Did the treatment center have the carboplatin?
My daughter is still here which has been nice. I'll be missing her college graduation but we've been able to have our own graduation celebration here in ATL which has been so nice!
I leave tomorrow for Dallas to spend the weekend with my son and his wife. My son will then drive me to Houston and come to my treatments with me. My husband will join us Wednesday.
I read the Penguin Cold Cap instructions this morning. It is A LOT! But I've made the investment so I'm going to give it a go.
I hope you both continue to feel better after your treatments!
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Catm - Tuesday will come and go. You'll be busy with a blood draw, a visit with your oncology team to review your counts, setting up and settling in in your chair, getting pre-meds and getting your capping routine in place. You'll be so busy for the first few hours and then when the infusion starts, you'll be monitored very closely. Try to nap. It's a long day but also a good day. It's the day you hit cancer back with a sold punch in the gut. You can do this! You are strong and determined!
If my port were two or three inches higher, access would be even easier! I suspect they place the ports to avoid them being in the way for future procedures.
Iamnobird and Catm
Chemo went well today. Picked the dogs up from daycare and got home before rush hour.
The had carboplatin so I exhaled and found a calm place in my head! Stepping ahead on the path of healing.
My port wasn't working for my blood draw. We did all sorts of things to see if we could get the blood draw to work. Some jumping jacks, bent over with palms to the floor. Eventually the nurse drew blood from my arm and got TPA for the port. TPA is the drug they infuse for stroke patients to break up clots. It did the trick! Port was working perfectly for chemo. They used heparin at the end of chemo during the port flush to attempt to prevent this happening again. I probably didn't drink enough fluids these past few days. The nurse said it happens often and it's nothing to stress over. She knew exactly what to do. Didn't have to look anything up or get signoffs on meds - seems this is a standing procedure.
Cold capping was a bit uncomfortable for some reason today. I assumed the pose of the napping kitten, snuggled up in my cozy hoodie and blanket and turned the heat on in my chair. The cap wasn't bothersome enough to prevent me falling asleep.
I brought bento boxes with me - one packed with fresh berries, yogurt and mini scones and the other with leftovers from last night - sheet pan gnocchi with broccoli, cauliflower and onions tossed with fresh parmesan. Added some fresh baby spinach and ate it as a cold salad in mid-afternoon.
I shared breakfast with an older Italian woman who is having a difficult time. She has ovarian cancer and lost all her hair after her first chemo. She also ended up in the ER during her first chemo. She needs a cheerleader and to find her smiles again. Since we are there on the same day, I'm determined to help her find her inner warrior and some joy on the path. Today we did selfies to share with family and friends - holding up fingers for the infusion number. We also named three things that we are thankful for. And we noshed on berries. Small joys. Next week I may try my hand at baking Italian butter cookies or an Italian cheesecake for her. Living outside myself is the best spirit lifter for me.
You can tell how wired I am by the length of this post. The mood dive will come when the steroids wear off. I'll embrace the naps, a soak in the tub, some chicken soup and 2 litres of seltzer. As my mom used to say, this too shall pass.
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Catm: Yes. I think it will all seem much clearer when you get started on Tuesday. We are on the same day so I will be thinking of you when I go in that morning Finland time. And you will be heading in when I am all finished up. I am so glad you got to celebrate with your daughter before treatment, but sorry that you are missing graduation. Cancer stinks. But yes, it does help to focus on the fact that you get to actually do something to fight your cancer instead of all of the passive waiting while they scan this and that we have had to endure over the previous months.
Njdogmom: I recognize that steroid fueled energy:). I also love that you are embracing it as a time to nourish others and make friends. And I am jealous of heated chairs lol. And borrowing that sheet pan gnocchi as a potential lunch idea here. I do have the ingredients in my fridge. Blueberries are a culinary highlight in Finland apparently so I am lucky to have lots of them this summer.My skin is breaking out! Ugh. I think it is a mild “chemo rash” reaction to the Taxol. I have messaged my nurse as she said they can give me a prescription cream to clear it up. Then I went on the HER2+ FB group and saw some terrifying examples of what the rash can turn into. I mean, seriously. I’ve never had skin that breaks out. Is it honestly necessary along with the hair loss and the dryness and lack of overall skin glowy-ness? Anyways. Hopefully we can rein this in before it gets bad. I actually backed off my sauna plans last night. I am afraid that the heat will make my hair fall out faster. And part of me wonders if I should just start to embrace that and be done, but the other part isn’t there yet. And I really don’t want it to come out in handfuls at the hairdresser or something on Saturday.
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Oh, I was going to add that I did receive my virtual second opinion from the Cleveland Clinic yesterday. The oncologist there is actually is all in agreement with my oncologist here. She said that TCHP (which is Catm’s regimen) is a good option, but that my oncologist has me on an equally good one that shows excellent PCR rates. Especially if we do the extra heart monitoring. I was sort of secretly hoping to get another doctor to say that I could drop the EC part of chemo and just do the Paclitaxel and PHESGO shots, but at stage 2 that is just not going to happen as there isn’t enough research showing efficacy yet. Sigh. Anyways. It is all good. Just a long road. But I am reassured that I am on the right path.
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good morning!
Thank you both for your encouraging words about Tuesday and I am ready to get next week behind me. MDA is also doing a biopsy of my left breast on Monday to make sure the "cyst" is just a "cyst"- I think this is a good idea. After chemo Tuesday, I will also have 2 markers put in my right pectoral muscle on Thursday to mark where the cancer was seen- also a good idea.
njdogmom; I just love how you have befriended the Italian lady. There are strange silver linings to this surreal journey and I just love how you & Iamnobird are finding them. I am finding them as well. My daughter just left to go back to VA. She is already making plans for us when she comes back for the summer; cooking and redecorating a bedroom we are going to setup for me as a quiet space. I am also so grateful for my sons. My son in Dallas is planning our time in TX together- all silver linings.
njdogmom: So glad the carboplatin was available!
Iamnobird: I am glad you are getting second opinions on your treatment. I am not quite up to speed on what it all means but I am sure I'll understand soon enough! I also hope your treatment next week goes well and I'll will also be thinking about you. I also seem to recall that you are triple positive?
I leave for Dallas in a couple hours, then on to Houston on Sunday.
njdogmom- hope you continue to feel ok and Iamnobird, hope that rash gets better!
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Oh i had one more "share" on the well intending friends subject. Two friends randomly dropped off goodies yesterday, which was so very kind. These two friends bumped into each other at a farmers market and the one friend texted me "we hugged each other and the flowers i dropped off to you are all wilted because we both started crying about you". I am practicing the philosophy of knowing people's good hearts. Both of these ladies are wonderful people so i responded thank you so much but the whole imagery of the crying made me feel depressed, like i was a lost cause! My daughter thought it was odd as well. Thanks for letting me share/vent!
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You are not alone catm! Some of my friends treat me as if they're planning my funeral. One even asked me, on the day of my diagnosis, if I had picked out a coffin. I'm not kidding. I added her to the toxic/avoid list for a couple of months and when I did speak to her, I told her exactly why. It's touching that people are deeply concerned and helpful that they understand that we are crying and frightened too. It's also hard to be living so publicly and to be the topic of other people's conversations.
My neighbors asked if it is okay to share updates that I pass along to any of them amongst the group so that I don't have to tell each of them. I loved this idea and thanked them. Anything I share with one of them will get to all of them, unless I ask that something not be shared.
It's Friday. I'm looking forward to a glass of wine and some wind down time this evening.
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Catm:
Ugh. I get it. I’m also sure they meant well, but I would hate that also. People need a primer on what to say or not for sure. And that seems overly dramatic in this day and age when cancer is, unfortunately, a common diagnosis and breast cancer has such a high survival rate.
I am actually ER+, PR- and HER2+, so yet another fun combination. The estrogen in my baby tumor was really low, much lower than my DCIS. My doctor thinks that is because it was so new and it is likely that it would have a higher level if we had caught it a bit later. So he is treating me as estrogen positive and wants me to do the hormone blockers and such.
Safe travels! It is pizza and movie night around here:).0 -
Thank you Iamnobird- I appreciate you (both) letting me share.
I’ve rented the Penguin Cool Cap system. The oncology group I’m currently with in ATL will only let me use the Digni Cap.
I’ve heard Penguin is the best. What are you using njdogmom? Are you cool capping Iamnobird? I’ll do some research on Digni Cap but wondering if either of you know anything?Hope pizza night is fun Iamnobird. We’ll do Mexican in Texas for Cinco!
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Iamnobird: thanks to for clarifying your receptor status for me. So sounds like the ER+ came from a secondary tumor with the DCIS diagnosis? Is that correct?
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Catm: sorry to be so confusing:). My DCIS was the same as my invasive, ER+, PR- and HER2+, but my DCIS was 70 percent estrogen positive and my invasive is only 10 percent.
I am cold capping, but not really. It isn’t common here at all. I’ll say my hospital has some caps that they keep in the medical grade freezers and my nurse switches them for me every 15-20 minutes. Other than that, they don’t fit especially well and no other rules are followed. So it might keep my hair here for a couple more weeks, but I think I will lose it for sure. I have heard Penguin is the best with TCHP chemo, but I also have heard it can be the most labor intensive. Dignitas is easier I think.Happy Cinco de Mayo! I definitely miss the Mexican food!
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Thank you Iamabird! I haven't figured out what i will do about not being allowed to use the Penguin system at my current oncologist's infusion center but have some time to ffigure it out.
Now in Dallas!
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I'm using the paxman system. That's what's available at my cancer center. There's no switching caps. You're cap is connected to a machine that keeps freezing liquid running through the cap the whole time. If you need to use the rest room, you have to disconnect from the machine. I think dignicap is similar to paxman in that your cap is connected to a machine. There's a neoprene overcap that snugs the cooling cap to your head.
My cinco plans are my Friday night glass of zinfandel. 🍇 Cheers!
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Cheers to wine! I had a tiny glass of red with our pizza.
It’s hair day! We are going to lunch at a seafood spot that I like first and then getting a cut. I really wasn’t going to mention my diagnosis to the stylist. I just don’t feel like talking about cancer. My hair hasn’t been falling out so hopefully it doesn’t do anything embarrassing at the salon. The things that cause us anxiety 🤣.
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I told my stylist that I was in chemo. No razors near me please and mind the scissors! 😷 I anticipated being emotional and didn't want her to think it was her fault. Let us know what style you chose! I started out thinking shoulder length so that I could still have a pony tail but ended up going chin length. It's been much easier managing the cold cap without the waist length braid hanging down my back.
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I did end up telling him right out. I didn’t want him to think that I was crying because of him. I really like it. It is a short shag with bangs. Longish in front (on my neck)
and shorter in back. He was so kind. It was a good experience. And I had the most beautiful salmon soup and a little glass of wine with my husband first.
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Before:
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Good afternoon from Dallas!
Had a very nice Cinco de Mayo with my husband, 2 sons and daughter-in-law last night. I'm now hanging out with my daughter-in-law (talking too much about the "c" and breasts I'm afraid! Oof) and will head to Houston tomorrow with my son.
Oh my gosh! Iamnobird, I LOVE your shag haircut and you look beautiful! You look fabulous and are an inspiration to me. Love your jaunty scarf too! I have many beautiful Hermes scarves from my mother and hope I can master the art of the stylish scarf tie!
Cool caps etc: I am getting to the point where I am thinking that the Dignicap at the oncologist's office will be fine- even though I rented the other Penguin system. I have also heard that Penguin is best for the TCHP regimen, thank you. I might pivot to another oncology group which allows the Penguin system but starting over with another group in Atlanta sounds exhausting right now.
njdogmom; have you been able to hold onto some/most of your hair? Also, am doing a little catch up from a day of travel yesterday. I loved your share of the "coffin"- that is truly a hard one to top in the category of "crazy things people say"!
njdogmom; How are you feeling now coming down from the steroids? I hope you are feeling ok.
Iamnobird: Fingers crossed for you this Tuesday! I am very ready to get next week behind me.
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