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Starting chemo April 2023

iamnobird
iamnobird Member Posts: 229

I didn’t see a thread for this so I was hoping to find some chemo buddies. I just found out today that I will start chemo next week. I am an American in Finland and had an occult 11mm ER+, HER2+ IDC tumor found in my final pathology after my mastectomy 4 weeks ago for 9 cm of DCIS. As an added surprise, one sentinel node was positive. My MRI, mammograms, biopsies and ultrasounds didn’t show the positive node or the IDC. I am classified as stage 2a. I had hoped for the stage 1 treatment of weekly Paclitaxel with Herceptin, but the positive lymph node made all the difference here.

So, I am looking at 3x of EC chemo, followed by 3x of docetaxel with Herceptin/Perjeta injections starting at the same time as the docetaxel and continuing for a year. I will also have radiation targeted to my axillary nodes and 5 years of Tamoxifen.

I am hoping to cold cap to save my hair, but don’t have details on the machine available at my hospital yet. I am terrified. Especially of the EC as the side effects sound pretty brutal. My neighbors want to start bringing meals and such and I am not even sure what we need at the moment. It’s definitely going to be a long year. This is such a long road and I still feel blindsided by this diagnosis and worried because we won’t have anything to show whether the chemo worked or not as the tumors are already gone. I know it would have been treated differently if we had known that the invasive cancer was there.


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Comments

  • moderators
    moderators Posts: 7,684
    edited April 2023

    iamnobird , thank you for staring this thread. We're sure you'll be in good company here!

    If you want to learn more about all things chemotherapy, you may want to check out these topics created by members:

    Additionally, we would like to inform you about our virtual "In Treatment" groups that meet every Tuesday and Thursday. The registration page is here, if you're interested: Topic: Starting or going through chemo? Join us on Zoom.

    Good luck with chemotherapy, and we hope this helps!

    The Mods


  • njdogmom
    njdogmom Member Posts: 181
    edited April 2023

    Is this virtual seat taken Iamnobird? I started chemo 4/12 and would appreciate your company.

    Sending hugs your way. This is all so overwhelming. It's my understanding from friends who are survivors that after the tumors are removed and chemo is finished, labs and other diagnostics are used to track the success of chemo.

    I have TNBC. Stage IIa, Grade III 3.3 x 2.4 x 1.7 cm tumor in my right breast. Current treatment plan is Carboplatin + Paclitaxel + Pembrolizumab (Keytruda®) followed by Cyclophosphamide + Doxorubicin + Pembrolizumab (Keytruda®), lumpectomy, radiation and then Keytruda® every 3 weeks until next April. It's going to be a long year indeed.

    I had a reaction to Paclitaxel during the first infusion. The nurses were on top of it and had me feeling better within minutes. I also had a migraine like reaction during the Carboplatin infusion with an aura but never got a headache. I slept through week 2 of chemo.

    I'm cold capping with the Paxman system. I haven't started with cold mittens and booties. I'll be reading up on them this evening.

  • iamnobird
    iamnobird Member Posts: 229
    edited April 2023

    Hello njdogmom,

    I am so happy to see you here! And really happy to have your company on this journey. I will be just a couple of weeks behind you as I finally start this Monday. The tumor board met and unanimously agreed on a new treatment. I will be doing weekly Paclitaxel and triweekly PHESGO shots (Herceptin and Perjeta) for my HER2+. They feel that the most important thing in my situation is to get the HER2+ treatments into me ASAP and the other regimen would slow it down as you can’t take the PHESGO and AC at once.

    I have heard that reactions to Paclitaxel the first time are really common. I am glad they sorted you out. I am really hoping to sleep through treatments also. I had a PET scan yesterday and took a nap while waiting the hour for the tracer to get through my system. My body seems to finally have learned that sleep is a good reaction when stressed.

    My youngest child turns 16 tomorrow so I will make a cake today. We also are having just gorgeous weather here so I am hoping to do lots of long walks this weekend. I am still healing from the surgery so a bit slow, but mostly normal.

  • njdogmom
    njdogmom Member Posts: 181
    edited April 2023

    Happy birthday to your child Iamnobird! Cake baking and long walks sounds like a relaxing weekend.

    How are you feeling now that the new treatment plan is in place and the HER2+ concern is being addressed immediately? Much as chemo isn't fun, I took comfort in finally taking a step on the path forward. It's a long road and now we're moving. I wish you that same feeling of being able to exhale after Monday.

    My next infusion is scheduled for Thursday. I expect I'll be getting a new treatment plan due to the shortage of carboplatin. I was stressing over it but responses in these forums helped reduce that a bit.

    The weather is beautiful here today too. It's warm and breezy. Perfect weather for a nap with the windows open. I'll have to make a point of doing that later after I take the dogs for a walk.

  • jh40
    jh40 Member Posts: 139
    edited April 2023

    iamnobird and njdogmom - Just popping in to offer some encouragement! I am triple positive and was where you are last August, right at the beginning. I finished up chemo in November and am now on Herceptin only until this coming November. I had a mastectomy and the final path showed DCIS along with the 19mm tumor that they initially thought was only 11mm. It’s common for Her2+ to present with DCIS from what I understand.

    It’s so scary in the beginning. I was utterly terrified. This forum helped me immensely, as did connecting with other women once I was in treatment. Some days it felt like I’d never get through it, but like all the women who came before me, I did, and you of course will too.

    I was on weekly Taxol + Herceptin, and now on Herceptin only. It is far easier. You’ll get there.

    If you can tolerate it, ice your hands and feet during Taxol; it wards off neuropathy and will keep the nail beds from lifting.

    I never had a reaction with Taxol; most people don’t. I do have skin breakouts from the Herceptin, but it is such a minor thing and I really can’t complain considering the benefit of these drugs.

    Walking helped immensely with the fatigue, mental and physical. Tons of water and plenty of smoothies. Nutrition is so important.

    You can do it. I remember when others encouraged me in the beginning and I was appreciative but it still felt like the earth was sliding off its axis. Sometimes it still does! But we are all stronger than we think we are. We have each others backs. I’ll be thinking of you both!

  • iamnobird
    iamnobird Member Posts: 229
    edited April 2023

    Hi njdogmom,

    Enjoy napping with open windows. That sounds heavenly. And yes, I am so ready to get started. I find treatments, as difficult as they might be, are not as bad as the endless waiting and worry. It is the fear of the unknown that I have the hardest time with. And the constant imaging that reveals bits and pieces of my diagnosis. I am hoping that the PET scan last week gives even more clarity, and that starting my treatment gives me a sense or empowerment. I hate feeling like I have no control over this. For me, that is the worst. Just the sense that my body has gone haywire and there is nothing I can do to control this. Which might be mostly true but starting to fight it with the medications is something.

    I hadn't even heard about the shortage of carboplatin. I am sure they will work it all out. They might even have enough stockpiled for it not to affect you since you are going through treatment now.

    I am cold capping to try to maintain another attempt at control. We shall see if it works or not. I have really thick hair and many women do keep it on the weekly Paxil so we will see. It gives me another focus to pretend like I can do something to sway outcomes.


  • iamnobird
    iamnobird Member Posts: 229
    edited April 2023

    jh40,

    Thank you so much for popping in with encouragement. I am so happy that you have reached the end of your chemo and are tolerating the Herceptin well. I am also happy that you had fairly minimal side effects facts to the treatment. That is SO encouraging. I think it totally makes sense that DCIS and invasive HER2+ are together. I guess that a high percentage of DCIS is HER2+ so they might eventually find that the more aggressive Grade 3 DCIS is a precursor to the HER2+ tumors. My oncologist felt that if mine hadn’t been found for another 6 months (they almost didn’t biopsy because the signs on mammo and ultrasound were so subtle), it would have grown very large and spread further. And it is clearly a fast learner.

    I love walking, water and smoothies so hopefully they will serve me well also 😀. I plan to cold cap and ice my feet and hands. So I think my sessions won’t be the most comfortable time of my life, but hopefully I can get through. I bought a heated throw in case I am freezing.

    Do either of you have somebody who stayed with you? My husband will stay the first time and doesn’t mind staying every time, but I figure if I am sleeping, it might not be necessary after the first few times once we get into the groove. He can go to work for a few hours, then come back for me. I am pretty sure the nurses will be really attentive.

  • iris2022
    iris2022 Member Posts: 10
    edited April 2023

    Hi iamnobird,

    I don't post much, but I do keep up with the boards, as I am about to have treatment #5 of 12 weekly Taxol and Herceptin. I saw your post about someone staying with you during treatment, and I wanted to let you know that my husband had to be out of town for treatment #3, and I went by myself and was able to drive myself home. The Benadryl pre-med wore off by the time I had to leave, and the nurse told me that I could stay as long as I needed to after. I also had a friend on "stand-by" in case I needed a ride (I live about 40 minutes from the center, so just far enough to be inconvenient). After that week, I decided to just go myself each week so that my husband doesn't have to miss work. I asked to reduce the Benadryl, and they cut it in half.

    I don't mind being alone during treatment. Honestly it's kind of relaxing. I can take a nap, read or watch tv, and the nurses are very chatty if they aren't too busy.

    Once you get that first treatment done, the "unknown" element is mostly behind you. The fear of the unknown has been the worst part of each phase of treatment so far. I was pretty scared for the first treatment, but it really was no big deal at all. I couldn't feel a thing, other than the Benadryl loopiness, and that's temporary. The first week of side effects weren't that bad at all (heacache, dry eyes, acidy tummy), and actually have been better each week as I've learned the best way to manage them.

    Best wishes to you! My treatment day is Monday as well, and I'll be thinking of you!

  • iamnobird
    iamnobird Member Posts: 229
    edited April 2023

    Hello iris2022,

    Congrats on being almost halfway through your treatment! That is huge and has to be such a relief. Thank you so much for the reassurance on being alone there, as well as your information on side effects. I am so happy that they have been manageable for you. We have similar size tumors (mine is 11mm) and the same treatment day 😁. I am at a private hospital where they are generally super attentive so I am hoping that the chemo area is pretty mellow with not many of us there. I imagine tomorrow is full on with lots of new information that then settles into a routine. I will be thinking of you tomorrow as well.

  • njdogmom
    njdogmom Member Posts: 181
    edited April 2023

    Thanks so much for the encouragement jh40! It helps on so many levels to be reminded that so many have come before us and that we will get through this. Hugs to you for lending some much needed courage and strength.

    Iamnobird - I'm single and live alone. My sister-in-law came with me for my first chemo session and stayed the whole day. I was so thankful to have her there. I don't know that I'd have been as comfortable falling asleep had I not had an advocate watching over me. She kept a close eye on me and alerted the nurses when I looked flushed. Each time I woke up, there was someone right there next to me cheering me on. She listened to audiobooks while I slept. The nurses were really attentive and after day 1, I was comfortable going on my own. I've been trying to take rain checks on the offers of help knowing that it's a long road. I'll need help as I get further along in treatment and when I have surgery.

    I haven't been icing my hands and feet. I don't think I'd be able to sleep and sleep has been the best stress reducer for me. I may end up regretting this decision.

    I'll be thinking of you tomorrow and looking for you here. jh40 is right. We've got this!

  • njdogmom
    njdogmom Member Posts: 181
    edited April 2023

    I stepped past the first tiny milestone on my journey. Phase 1, cycle 1 - done!

    How was your first chemo iamnobird? Was thinking of you and hoping all went well.

  • iamnobird
    iamnobird Member Posts: 229

    Njdogmom:

    Hello! I’m so glad the forum is back. And so many congratulations! Finishing the first phase and cycle is huge. How are you feeling? Is the next bit of chemo supposed to be harder? Or just different? Do you have a bit of a break in treatment or move straight on through?


    I feel like this has been the longest week ever in many ways. Monday was chemo. And I actually had a meeting with the oncologist and got the proper treatment plan. I was dismayed to find out that it isn’t just 12 weeks of Paclitaxel with PHESGO. He wants to do 9 weeks of the Paclitaxel and then 9 weeks of EC chemo. I was a bit stunned and didn’t question it that much and moved straight into chemo. But, I am afraid of the anthracyclines mixed with the Herceptin as it is really hard on the heart. And if mine was damaged to where I can’t have Herceptin in case of recurrence, I would be totally out of luck. This is pretty standard for Europe where they tend to use these meds instead of carboplatin, but still worries me.

    I’ve asked to talk to him again on Monday. The first part of the plan is perfect and I am happy to move forward. The second part concerns me. I have also reached out for a second opinion from Cleveland Clinic to see what other options there are. I am hoping he can give me good reassurance as well. I’d like to do 12 weeks of Paclitaxel and my year of immune therapy and radiation, which would normally be enough for the 11mm tumor. But the positive node is the sticking point. Plus, we just don’t know if my tumor will react to the taxane and immune therapy so we are operating blind. That is why he wants to do two different types of chemo.

    Let’s see. My PET scan was totally clear so yay. No other signs of positive lymph nodes or cancer anywhere else. Which is a huge relief. I LOVE my chemo nurse. She has been there for 13 years and knows what is going on and how to fix it. I also had a reaction to the Paclitaxel but after a bit more steroids and going slowly, I had the infusion with no issues. I haven’t had any real side effects from treatment. A weird metallic taste yesterday and some tiredness, but otherwise it has been fine.

    The cold cap system they are using is not a system really. Just iced caps that they will stick on my head and switch out every 15 minutes or so. I don’t have a lot of faith it will work so am buying all of the wigs and scarves and hairpieces. And trying to prepare myself to lose my hair. I love my hair an unreasonable amount so resigning myself to this is hard. I think I should cut it short to start to ease myself into this. But haven’t made the appointment yet. And I am not icing feet and hands yet either. Marianne seemed to think we can wait a bit and see if I have any signs of issues.

    My neighborhood is being lovely. They are feeding us weekly and have signed up to be my walking buddy on several week days. So that is really nice.

    Does anyone have nice weekend plans? It is a huge holiday here, May 1 is Vaippu, the start of spring in Finland and celebrated a lot. Costumes, college kids celebrate the end of school. Balloons have something to do with it. I would love to check out the festivities downtown, but am avoiding crowds of course due to the chemo. Hopefully next year.

  • njdogmom
    njdogmom Member Posts: 181

    So glad to see a post from you Iamnobird! I was thinking of you all day on Monday and was sad that the forums were down. I was so thankful to the mods for sending you an email.

    I didn't finish phase 1 … I finished phase 1, cycle 1. 3 more cycles in phase 1 and then on to phase 2. I'll be at this all through the summer and into the fall. A very tiny milestone but I plan to celebrate every one of them!

    I had a similar experience with the reaction to paclitaxel. Additional steroids and slowing the infusion solved the issue and I haven't had a similar reaction during the following two infusions. I was thankful today that they had carboplatin. At least I got though a full cycle. Cheers to the pharmacy team!

    I had a haircut the evening before my second infusion. I was thinking the longer length was putting stress on my hair follicles so I cut off a 21" pony tail and am now sporting a short haircut. I actually love it! It's easier to get the cap on and off. I thought I'd be emotional during the haircut but it actually felt really empowering! A new, lighter, stronger me! In the end, I found I wasn't as attached to my hair as I thought I was. I admit that I do miss the long braid.

    It's great that your neighborhood is being so supportive! I'm having a similar experience. Visitors stopping by during chemo and at home. Yummy muffins left in my garage, dinners dropped off, offers of rides to and from chemo, and offers of help walking the dogs when I'm not feeling up to it.

    I'm hoping to get some cooking done this weekend. I'd like to freeze some chicken soup and other light meals for when I don't feel up to cooking. We're expecting a rainy weekend here. We might get a break Sunday morning so I'll try to get a short hike in with the dogs.

    Smart to avoid dense crowds of partying people. How long have you been living in Finland?

    P.S. Now you have me craving funnel cakes and other festival food.

  • iamnobird
    iamnobird Member Posts: 229

    Ah. Gotcha on the cycle. I think I have 2 phases with 3 cycles each. Each lasts 9 weeks. Then radiation and a continuation of immune therapy.

    And thank you for reaching out to wish me a good day. That was so kind of you.

    Finishing a cycle is a milestone for sure! And something to celebrate. It makes my heart happy that you are seeing an outpouring of support as well. I think these sorts of things really bring out the best in many people.

    So, we actually arrived here in Finland in September. My husband works for the US Embassy so we live a very nomadic life. We were in Vienna for the last 4 years, Brussels before that, Beijing before that. It is fascinating and there is lots to love, but can also be incredibly hard. Especially when something like this happens. So I have US insurance and go to the private system here in Finland. I also have the option of returning to the states for treatment, but my support network is here now and my child is settled into school, etc. My house and pets are here. Everyone in the healthcare setting here thankfully speaks good English so that isn’t an issue when seeking care. But, some things are quite different of course. And it can be lonely as I just don’t know anybody else here battling cancer. I just wish that I had had more time to settle and explore before getting sick. It is really a lovely place. We went up north at Christmas to look for the northern lights and do husky sledding and reindeer rides. I am originally from Texas so am fascinated by having this much winter 🤣

    And thank you for the support on my hair. I had my daughter help pick out some short options. Now I just need to make an appointment and do it. Maybe I will find it isn’t as big of a deal either. I have probably put way too much emphasis on it as what defines me.

  • njdogmom
    njdogmom Member Posts: 181

    Iamnobird - What a fascinating and unique set of life experiences you and your family are having! I've traveled quite a bit but have never lived abroad for an extended period. My longest trip was a summer study abroad in Ireland back when I was in college. I look forward to hearing about your very late evening sunsets over the summer! Dogsledding sounds amazing!! How was it? I had no idea you could ride a reindeer. I'll have to do a search after this post!

    So many women who have been down this road have reached out to me since my diagnosis. I am so thankful to all of them for their kindness, support and candor about their struggles. I think cancer is just a lonely place no matter where we are. I find it easier to express my fears and frustrations here in the forums than I do in person and so these conversations on the boards, and especially with you, have been really helpful. I thank you for that.

    I was wondering about how you communicate with your healthcare team and if you're fluent in Finnish. Glad to hear there isn't a language barrier. Learning the language of breast cancer and treatment is enough to have on one's plate.

    I hope you have a similar experience with your haircut. I was told that I didn't have to cut mine for cold capping but I was just ready to move on, embrace the new norm and get the show on the road, as the saying goes. It felt like progress and letting go of things that no longer mattered.

    I spoke with the dietician from the cancer center today. I had requested a consult to get some ideas on improving nutrition as I go down the chemo journey. She's going to meet with me in person next week and she suggested I start the healthy 10 challenge on the aicr.org site. I'm planning to read about that later this evening.

  • iamnobird
    iamnobird Member Posts: 229

    Hi NJdogmom,

    I tend to be the same I am very private in general and really don’t love talking to folks in person about my diagnosis and journey so far. I am also so thankful for your company on this road as I also feel more open and able to share. I did share my diagnosis on FB, which was a huge struggle

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    for me. I just hated making something so private, so public. And I hate having folks feel sorry for me. But, I think my husband wanted people to know why we might be a little less organized and might need some extra support. Plus, I had 5 friends tell me that they got a mammogram this month because of my message. I think it is shocking when it actually happens to someone you know, especially someone who doesn’t seem to have many risk factors. Anyways, that made me feel like I was helping a bit, which is a good thing.

    None of us speak any Finnish. It is an incredibly difficult language and I am really thankful that pretty much everyone, from the checkout folks at the grocery store, to the vets and doctors, speaks English. It makes this easier than Austria, for instance, or Brussels, where most people do speak English, but there is definitely as assumption you will speak a bit of German or French. My French is manageable. My German is not 🤣. My Chinese is terrible, but I did need some there for basic living.

    Ha. So I perhaps misspoke with the reindeer rides. You visit the native tribes that care for the reindeer in the wild and they have a couple of domesticated ones that will pull you around in a sled for a bit. Nothing too glamorous there. But it is really beautiful in the north. I want to go again next year for sure


    I love Ireland. How amazing to stay there for a whole summer. I studied in Spain for a year of college and my best friends in Spain were all Irish. I’ve been 3 times now to explore Ireland. In fact, right after I was diagnosed in February, we went on a little long weekend couples getaway to Ireland that we had planned. It was really nice.

    I will take a look at that aicr challenge as well. I am aiming to improve all of our diets in general so nutrition is a focus for me. We don’t eat badly, but there is room for improvement I have been a lot better since my DIEP surgery since eating lots of carbs makes my stomach swell. I am making a lot more veggie side dishes and salads and lighter things. We don’t eat red meat and haven’t in 30 years or so. I also mostly stopped drinking alcohol after my diagnosis, with the exception of 1-2 small glasses a wine a week. I was just put in touch with a dietician who is part of the cancer support team from my insurance so I look forward to her recommendations.


    Anyways. I hope you are feeling well. Enjoy your day! I find it interesting that my chemo nurse calls chemo a “chemical marathon” for your body. She thinks I will probably have minimal side effects until treatments 4-5. Then I am likely to have various things as the chemical effects accumulate. Right now, she says my overall good health is still protecting me from most side effects.

  • catm
    catm Member Posts: 130

    Hi Dogmom and Iamnobird-

    I just finished reading your posts and was excited to find some ladies at a similar stage of this very surreal "c" journey. I would love to join this conversation.

    I was diagnosed with HER2+ IDC April 4th in my right breast. Since then, the diagnosis has progressed to multicentric carcinoma (multiple cancerous tumors in the right breast) and stage 2 as a biopsy showed at least some cancer in a nearby lymph node. There is also some cancer in my pectoral muscle, but the cancer in the muscle is not believed to have progressed to the chest wall.

    I live in Atlanta, GA but also have doctors now at MD Anderson in Houston. I'll be doing chemo first, CTHP 6 rounds then surgery (bilateral mastectomy) after the chemo. I will have my first chemo session at MD Anderson on Tuesday May 9th.

    I've ordered a Penguin cold cap for my sessions as well as cold booties and hand mitts.

    I am quite anxious about my first chemo session so any tips/words of encouragement would be greatly appreciated!

    Iamnotabird- I loved you sharing how hard it is for you to go "public" with your diagnosis. I have a wonderful husband and adult children and many wonderful friends BUT (and here it comes) I am worn out by all the texts and VM's. I'm learning to let calls go to VM and the art of the quick text response. I am kind of dreading going to dinner tonight with a friend who will no doubt want to "talk about it". You both get it.

    I am sorry that you both are on this weird journey and I hope that your chemo has been going well.

    More info: I am 58. Have 3 children: son Leland 29, just married in Dallas, son Alex 27 in Atlanta, daughter Hope 22 in Richmond VA and graduating from college 2 days before my first chemo- I have held off telling her about my diagnosis with her heavy course work but will tell her soon. I also have a 10 year old shepherd mix dog Lucy and a 6 month old gray Scottish Fold cat named Birdie.

    Hope you have a great day!

  • catm
    catm Member Posts: 130

    Oh and I am ER-, PR-, HER2+ My tumors are around 2cm

  • catm
    catm Member Posts: 130

    I see now there are multiple "breasties" posting- re-reading and thank you all for your posts. They are encouraging!

  • njdogmom
    njdogmom Member Posts: 181

    Welcome to Team April 2023 catm!

    I am so sorry that you have breast cancer and so glad to have your company on our journey. Are you commuting to Houston or staying there throughout treatment?

    I take mental breaks from cancer. For the first few months, I was taking weekends off. When people would ask how I was doing or want to talk about my next steps during those times, I'd just politely thank them for asking and then tell them I don't do cancer on weekends - that I'd get back to them on Monday. It made people laugh and also helped them understand that I needed some downtime. It's still overwhelming at times. I've learned to be open about needing space and normalcy some of the time. I also try to remember being on the other side of these conversations.

    No doubt, chemo isn't fun but it really hasn't been the horror story I anticipated. My only significant side effects thus far have been fatigue and brain fog. I think the brain fog is more stress related than a result of the chemo but I'm not sure.

    Some tips for your first chemo session:

    1. Our oncology teams are amazing. Seriously amazing! At the end of the day I hope you'll experience a relaxing exhale. Know that the exhale is there waiting for you.
    2. Have someone with you if you can. Having my sister-in-law there for the first session was comforting. I've been going on my own since and that's been fine too.
    3. The first treatment was longer than the ones since. Nap if you are able. It's a great stress reducer and passes the time. Don't panic if they have to slow an infusion and/or give you additional steroids. Iamnobird and I experienced this during our first chemo.
    4. Stay hydrated
    5. Wear really comfy clothing and bring a cozy zip hoodie or fleece to snuggle in. Bring a soft headband to keep the cold cap away from your forehead. The one provided with my cap wasn't soft/stretchy enough.
    6. I overpacked. I always overpack! I didn't need the zen coloring books nor the knitting project. 🤣 I may want them in the future but for now, a phone and an ipad is more than enough to keep me occupied between naps.
    7. Be kind to and patient with yourself.

  • iamnobird
    iamnobird Member Posts: 229

    Welcome, welcome Catm! I am so happy to have your company on this journey. Do you have family in Houston with you? It sounds like your son is close by. I’m originally from Dallas and my husband is from Houston. We have pulled up our Texas stakes and aim to retire to the Pacific Northwest, but I lived in Texas for almost 40 years. My kids are similar ages: 24, 22 and 16. The older 2 are currently in Texas. I am 51. I also have 2 -13 year old cats who have now lived in 5 countries🤣 and a 4 year old dog that we adopted in Austria. I love, love Scottish folds.

    Anyways. I am sorry that you have also found yourself in this situation right now. But as njdogmom mentioned in her excellent chemo advice, your oncology team is amazing and they will get you through this. I have a similar diagnosis, but am slightly (10 percent) ER positive which changes my treatment options just a bit as they want me to do a hormone blocker and maybe Nerlynx after I finish all of this other stuff.

    As for chemo, I totally threw stuff in a bag last minute for my first one. I had my phone and iPad, as well as a soft cancer blanket that a friend sent. I think slip on shoes are great so you can easily run to the bathroom, lip balm and a water bottle that keeps ice cold ( Europeans never ever have ice and I really want it during the infusion). My hospital provides snacks, drinks and coffee and light food like yogurt and sandwiches.

    njdogmom The bit about taking a break from the cancer talk on weekends is so brilliant. Yes. It gets exhausting. I know everyone means well. But I don’t want to spend relaxing time talking about it. The best thing is when friends just talk about normal stuff. It is so nice to feel normal and chat about teens and the weather and vacation instead of being asked how you are feeling, how your kid is handling all of it, etc.

  • catm
    catm Member Posts: 130

    Hi njdogmom and Iamnobird!

    I was so excited to see your posts. It means so much to me and I appreciate the connection with you gals who are a bit ahead of me.

    njdogmom, I LOVED your "I don't do cancer on weekends"- brilliant! Might need to copy?

    I do not have family in Houston but my husband wanted to get some second opinions at MD Anderson as my "c" got a bit trickier with the HER2+ as well as the multicentric carcinoma (also have a "weird" mass in the other breast, supposedly malignant but MDA is biopsying it the day before my first chemo treatment.) I was on the fence about doing the first chemo away from my home, Atlanta, but the team at MDA also will be putting markers in my pectoral muscle where there is evidence of cancer so that they can check out the area during surgery and post chemo- which will hopefully make the cancer disappear. (I am going to have my surgery, bilateral mastectomy at MDA.)

    I'm planning on the rest of my chemo happening in Atlanta and all of my doctors are in the loop on all of this.

    My son as well as another friend will be with me in Houston.

    Thanks for the encouragement and tips for the chemo.

    Amy going to re-read the thread but am wondering how each of you ae feeling now and where you are in the cycle? Hoping you are both feeling OK.

    Iamnobird- My Scottish Fold is SO sweet! and so soft!

  • catm
    catm Member Posts: 130

    I also bought the Elasto Gel Mitts and Booties per my oncologist's recommendation at MDA.

    Also, if I re-read correctly, I think you both njdogmom and Iamnobird) are having your second treatments this upcoming week? Wishing you the very best with your next treatments!

  • njdogmom
    njdogmom Member Posts: 181

    catm - I have triple negative breast cancer. My treatment timeline is weekly for 12 weeks, every third week for another 12 weeks, surgery, immunotherapy infusions every third week for another 6 months or so. If I opt for a lumpectomy, radiation will follow surgery. Last week was my third chemo treatment. Thanks for the good wishes! My next treatment is Thursday.

    I'm glad you both enjoyed "I don't do cancer on weekends" and hope you get to implement some break time too. So many people ask how they can help and sometimes the best help of all is helping us to live outside of that suspended state we've been in since the day we were diagnosed.

    Slip on shoes is a great idea iamnobird! I've been keeping my sneakers on the whole time. I'll have to do that this week. I also like the idea of limiting wine to 1 or 2 glasses per week. I had stopped having my Friday night glass of wine when I started chemo. I miss that wind down from the week ritual. I'm going to get back to doing that. I'm going to have a glass of wine this evening to celebrate your clear PET scan! That is such great news!! I'll be thinking of you tomorrow. I hope your consult provides reassurance that the current treatment plan accounts for your heart health and potential future treatment needs.

  • catm
    catm Member Posts: 130

    well, I used the "I don't do cancer on the weekends" (which my husband loves BTW) last night at a nice dinner with a dear friend and darned if she didn't bring it up another 4-6 times! It was frustrating but I know her heart is in the right place- just venting! You "breasties" get it.

    I also need to stop my nightly 2 cocktails. I've been thinking I won't want them once chemo starts? I've been so tense and anxious that the cocktail habit is an easy but I'm sure not healthy way to unwind.

    Do you gals know much about alcohol and cancer? I'm going to ask the dietician tomorrow.

    I get a port put in Tuesday morning.

    njdogmom- Good luck this week with your treatment. I'll be thinking of you on Thursday and you too Iamnot abird as I think you have a treatment this week as well?

    Sending virtual good thoughts your way!

  • njdogmom
    njdogmom Member Posts: 181

    I have a neighbor who can't avoid getting on the subject even when I tell her I don't want to. She continues even if I change the subject. She's a special case that requires special handling. I tell her I have to pee and then head back in the house. Sorry that your friend couldn't stay off the subject.

  • iamnobird
    iamnobird Member Posts: 229

    catm: Ugh. That is frustrating. I totally get it. I know everyone means well, but sometimes we just need some time off. So, for estrogen-fueled cancer, I do know that alcohol can increase estrogen levels and increase breast cancer risk. The latest research shows that there really isn’t a level of consumption that doesn’t increase risk over that of a non drinker. However, we aren’t perfect and we definitely deserve to eat and drink and do things that we enjoy. I did have an estrogen positive cancer so it isn’t the best thing for me. I really do like wine and the occasional cocktail so I personally am trying to limit my consumption to 1-2 small glasses of wine a week. I’ve switched to mocktails when we go out as all of the swanky places here have nice ones. Finland has a complicated relationship with alcohol (there are lots of alcoholics) so there are lots of alcohol free and low alcohol drinks. That gives me a chance to savor some drinks, but also lessens my risk.

    I definitely want to hear your oncologist’s take on it though. My oncology nurse said that I can have 1-2 small glasses of wine or beer each week while on chemo. So far, it still sounds good to me. But chemo affects tastebuds so who knows, it may change.

    Good luck at your port installation. I am sure it will go smoothly. I don’t have a port as my facility doesn’t do them. I hope my veins can make it it’s a lot of pricking and poking.

    Njdogmom: I am cracking up at your escape from your neighbor.

    It is cold again here! Boo. We are even expecting a few snow showers on Friday. I have put away the winter clothing so it better shape up 🤣


  • cancerian
    cancerian Member Posts: 11

    Hello Lamnobird, i am here with you. i feel like you are telling my story. i started with a biopsy diagnosis of DCIS. i had a double mastectomy thinking i was done with MRI's and tumor only to find out in the path report that i had 1.2mm cm of IDC and 3 positive lymph nodes. the tumor was ER, PR +ve and her 2 -ve.

    Needless to say that i am by no means done. such a huge disappointment. I now need chemo (TC), radiation and then anti-hormone therapy for 10 years(i am in my late 40's)

    My chemo starts on 5/10 and i am terrified. I thought about cold capping but it seems too much work. i definitely want to do the extremity treatment.

    Good luck with your treatments everyone. I am sending positive vibes your way.

  • iamnobird
    iamnobird Member Posts: 229

    Welcome cancerian!

    Wow, yes, you and and I do have virtually the same story! I am so, so sorry that you also find yourself here, but very happy to have your company along the way. It is all terrifying and overwhelming and I know so disappointing that there is more treatment to come. But, once you actually get started, it isn’t as scary as you feared. There remain plenty of unknowns, but for me, each time I get a little further down the road and see what is there, it is all way less scary.

    Anyways. I look forward to your company here ♥️.

    It is SO sunny here today and a major holiday. I slept a bit later than I had planned. The major activities of the day seem to be outdoors picnicking and grilling and drinking. I think we will do a walk by the sea and grill hotdogs and halloumi cheese. Pretty dang low key. My kid is meeting friends for a picnic and swim. It is still in the 40s so I think they are crazy, but this is so Finnish. They swim all year.

  • iamnobird
    iamnobird Member Posts: 229

    I wanted to see what you all are doing as preventive measures to help with side effects? I would love any tips you all have been given and thought this might be useful. I can get many things locally, but I am allowed US mail privileges so I am also stocking up on stuff from the states.

    I have started rinsing my mouth with a salt and baking soda rinse every time I brush as recommended by my oncology nurse.

    I also switched to a toothpaste made for babies as it is supposed to be less irritating.


    I moisturize everything like crazy, from my feet to my head. I am still healing the scars from my DIEP so I use straight up SHEA butter on them and Aquapor on most other parts. Except my feet where I use some strong foot moisturizer. I just bought scalp oils and have apple cider rinse as well.

    I have stopped my multivitamin as recommended by my oncologist, but I am allowed to take Vitamin D and Cranberry supplements. I am hoping to prevent UTIs as they are apparently very common and I struggled with them during my pregnancies. I am also allowed to take melatonin to help with sleep. I am also about to start taking a daily probiotic as I have heard that can help with stomach issues. In that same vein, I am eating a bit of yogurt every day.

    I drink a lot of water already, but am trying to up my consumption even more.

    I bought Epsom salts for the bath as it is supposed to help with aches and pains. I am definitely worried about muscle pain as the treatment continues.

    I think that is it for the moment, but I have bought so many things to stock my cabinets in case it is necessary.