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Starting chemo April 2023

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  • catm
    catm Member Posts: 130
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    Here’s a photo of me with my daughter (graduates college tomorrow)- we are enjoying a glass of “Rough Day” (very fun grumpy dog label) wine!

  • iamnobird
    iamnobird Member Posts: 229
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    Catm: Y’all are adorable! Thanks for sharing. Amd so many congrats to your daughter! I can imagine how exhausted starting with new oncologist is. I would probably just use the dignicap due to the ease of it all. I listened to a podcast where a woman used it (I think she was in Georgia) and had some tough chemo and good success. She used dignicap.
    https://thisunmillenniallife.com/hair-loss-during-and-after-cold-capping-scalp-cooling/

    And thanks for the compliment on the hair and my scarf. My mom just sent me this one and I love the colors. Finland is pretty much a 9 month scarf and hat spot (we had a few snow showers this week lol) so I am thrilled that my mom is a knitter.

    Okay. I’m off to bed! Have a great day. And you are so right, Tuesday you will know the drill and feel so much stronger and more confident.

  • cancerian
    cancerian Member Posts: 11
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    Hello iamnobird, thanks for your words of encouragement. it means a lot. its great that you are getting so well prepared. Good idea about the cranberry supplements also. I would check on probiotics as i was told they were questionable during chemo. It may also depend on the type of chemo you are getting i guess.

    I learned today that i will not be able to consume raw meats during chemo so no sushi. Shrimp tempura here i come.

    My treatment starts on the 10th. i will report back then. keeping fingers crossed.

  • njdogmom
    njdogmom Member Posts: 181
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    Iamnobird - you look FABULOUS!!! I hope you feel fabulous too! And it sounds like the salmon soup set the tone for a perfect afternoon!

    catm - I haven't noticed any hair loss yet but I think I'm playing less attention than I was at the beginning. At week 1 I was really anxious about it. At week 2 I cut off 21" of hair. By weel 4, Iamnobird had me looking at fun pink wigs. I'm just kind of rolling with it at this point. Congratulations to your daughter! I'm sorry that you're missing graduation and thankful that your first treatment will be behind you soon. Iamnobird is spot on. Y'all are adorable! 😽

    I'm going to have to either take a selfie or teach the dogs how to use my phone.

    I will be thinking of you both on Tuesday and of Cancerain starting her treatment on Wednesday.

    I scheduled a yoga lesson for tomorrow afternoon. I'm hoping it will set me on the path of calmness and emotional healing. These past few months have been physically tough and an emotional a roller coaster ride. I want to stand outside in the sunshine in mountain pose, breathe and feel strong. My nurse reminded me to wear sunscreen. Add that to the checklist of items we need to pay close attention to. 😎

  • iamnobird
    iamnobird Member Posts: 229
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    Cancerian: So much luck to you on Wednesday! I have heard that about sushi as well. But I am in Europe and they never seem quite as concerned with food borne stuff. I do think avoiding raw stuff is smart though so I’ve been choosing cooked options when we get sushi.

    Njdogmom: Happy to hear from you! You are still sounding well and I am so happy for that. Enjoy your yoga. And feeling strong and confident in mountain pose. Yes. Hats and sunscreen are apparently pretty necessary. I actually got a rash once when I was pregnant due to photosensitivity and it was nasty. It was so itchy and covered all of my exposed parts. I guess chemo gives us the same vulnerability.

    Ha. He used some styling stuff in my hair though and I have woken and it is like sky high crazy. I need to wash it and make it more natural. My skin has thankfully calmed down. I am now using the La Roche Posay Toleriane line. I do think the “acne” it is a reaction to the Paclitaxel. But not a bad one, thankfully. And I like to think that it is reacting because it is killing those bad cells. My nose has also started running, which is apparently due to the PHESGO shots. Nothing bad, just persistent. I’ve put the Shea butter on my nose. Seriously though, so far my side effects remain more minor annoyances than anything else. My skin is definitely drier all over. Getting ready for bed now involves an elaborate 20 minute moisturizing process. We are lucky to live at a time when side effects are so widely discussed and managed though. Oh, and I also find that my energy is definitely more limited. I overestimate energy levels frequently and then back down a bit. Yesterday was a lot as we took the metro downtown, had lunch and then did hair and browsed some record shops ( I found Fleetwood Mac Rumours, score!). Then we were going to run by the grocery and hardware stores but I was so done!

  • catm
    catm Member Posts: 130
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    Good morning ladies!

    I so enjoy hearing from all of you! I am now working off of an IPad the kids got me as a Mothers Day gift with my treatments in mind. It really is nice!

    It is so encouraging to me that Iamnobird and njdogmom are continuing to live life despite the treatments. I am anxious about the first treatment and how I will feel but you both give me encouragement. I think I’ll need to send a photo of me all geared up with Penguin cap! MD Anderson recommends them even though my oncologist in ATL has an exclusive agreement with Dignicap. Iamnobird, thanks for the article and I will read that.

    Njdogmom, are you in New Jersey? I would love to see a picture of you and/or a photo of you fur babies! I hope physically and emotionally you are in a good space today. I woke up at 3 am last night feeling anxious about 2 procedures and the chemo this week, but I think that’s normal.

    Nice to hear from you Cancerian and we can compare notes after Tuesday/Wednesday with getting through our first treatments.

    My son and I drive to Houston today. I think we will go for a walk this am. it is HOT in Dallas ( in the 90s!)


    We will all get through this!!!!

  • catm
    catm Member Posts: 130
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    Lucy (dog) & Birdie- the boss!

  • njdogmom
    njdogmom Member Posts: 181
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    Awesome pets catm! I sent pet and personal photos in a private message. I'm not comfortable sharing personally identifiable details in the thread. Shared reasons etc. in the message.

    Catm - You are going to be in excellent hands on Tuesday. The nurses will amaze you with their knowledge, skills and kindness. If you use lidocaine cream a couple of hours prior to your infusion, you barely feel when they access your port. You've got this!!

    Iamnobird - was it 1980's big hair? That may yet come back in style! I hope not, though. New haircuts have to be made our own and after a trim or two, they will be perfect. I think I want to add some light bangs when I go for a trim. I'm feeling a bit like Peppermint Patty from Peanuts with this haircut.

    The yoga teacher cancelled. I was disappointed but I can manage mountain pose without her. :)

  • iamnobird
    iamnobird Member Posts: 229
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    njdogmom: Bummer on yoga! But I hope you got some yoga in regardless. It wasn’t quite as big as my 90s hair. I had a spiral perm and it was the bomb. Hahaha.

    Catm: I am loving those pics. They are both adorable. And Birdie is very clearly the boss. Because that is only right and proper. I don’t miss that Texas heat, I have to say. This was always the worst when it is that hot already in May and you have the entire summer ahead of you! Anyways. I will be thinking of you. I know we have treatment together on Tuesday. When is your biopsy? Fingers crossed it is just a cyst.

    Okay off to bed. I have to go and do quick 3 week blood work tomorrow morning so they can make sure I am all good for treatment on Tuesday. I also now have a rash on my upper legs so need to mention that as well. I think I am literally just reacting to everything now.

  • njdogmom
    njdogmom Member Posts: 181
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    Good luck with the blood draw and I hope they have a quick remedy for the rash.

    P.S. I managed mountain pose with an assist from youtube. Good enough for today.

  • iamnobird
    iamnobird Member Posts: 229
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    njdog: Good for you!

    Bloodwork is all good so I am ready to go tomorrow. I am meeting my oncologist in the morning and will show him my rash. My chemo nurse wasn’t too impressed. lol. She thinks it doesn’t look too bad. But it is now spread across various parts, a bit on my hands, some on my thighs, a bit on my face. So I think it is a systemic thing. She agrees and thinks the doc can prescribe some topical and even oral meds to keep it in check.

    Anyways. It’s fine. I’m sure I will get sorted.

    I just wanted to pop on to wish catm lots of luck and love tomorrow! It is a big day and you will feel so much better after it is finished. ♥️♥️♥️♥️♥️

  • catm
    catm Member Posts: 130
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    good morning!

    Thanks for the shout out gals!

    Iamnobird: good luck Tuesday with your next round & hope the rash gets under control. Does it itch?

    Njdogmom: you rock with your mountain pose!

    Update: at MDA. Had an ultrasound for the “other” breast which has a tiny something something. Radiologist want an MRI guided biopsy so that’s it for today, other than the crazy amount of dry ice for the cold cap operation.


    Hope everyone has a great day!

  • njdogmom
    njdogmom Member Posts: 181
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    Glad your blood work is good and that you didn't get your nurse's attention with your rash iamnobird! I suspect you would have to present with a rash in the exact likeness of a Georges Seurat painting to impress them.

    Catm - glad you are getting procedures in the rear view mirror. I look forward to hearing from you tomorrow after chemo. I look forward to you settling in to the routineness of it all. The anticipation and anxiety are far worse than chemo. You've got this!

    Sending love, hugs and calm vibes to all of you. ❤️🌞

  • njdogmom
    njdogmom Member Posts: 181
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    Thinking of all of you today and looking forward to your posts. ❤️ It's my turn for a rash today. I just noticed hives on my arms.

    Wishing @cancerian a low stress first chemo tomorrow.

  • iamnobird
    iamnobird Member Posts: 229
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    Hello!

    All good here! It’s pretty routine now. The rash is in tiny bits all over and not too itchy. Doc thinks it is a systemic reaction to meds and I am taking a daily antihistamine. I also have prescriptions for oral antibiotics and a prescription topical cortisone cream if it worsens.

    Otherwise, they gave me the antihistamine first today so I snoozed. And I also found the cold cap just seemed colder. I was wrapped up tight under blankets for sure.

    njdog: I cracked up at the Seurat comment. 😆😆.

    Catm: Thinking of you and hoping all is well.

    Cancerian: Good luck tomorrow!

    Okay. Over and out. I was dead tired last time when I woke morning after. We shall see what tomorrow brings.

  • catm
    catm Member Posts: 130
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    Hi gals-

    Just got back to the condo after the first chemo, long day as you know but went surprisingly fast with all the activity, including my wonderful son swapping out the Penguin Cool Caps- BIG pain in the butt! I found out today that another hall (“Purple”!) at Anderson offers Paxman. Didn’t know. I’m going to use the Dignicaps at the oncologist & be done with it.

    The treatments went well, no reactions. Yay!
    I’m tired & fuzzy right now. Know tomorrow/Thurs might be tougher.


    Iamnobird: glad you have another behind you. Hope you feel ok tomorrow. Pls let us know.

    Cancerian: Hope your treatment went well too.

    Iamnobird/njdogmom: boooo for those rashes/hives. Hope they are bearable. njdogmom: are the hives bad? Getting worse? I’ve had terrible hives so please keep an eye on those nasty things.

    my son thought I looked like The Penguin

  • catm
    catm Member Posts: 130
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    well- meaning like The Penguin with all the cold gear stuck on

  • njdogmom
    njdogmom Member Posts: 181
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    I was thinking you look way more like a very pretty boxer punching cancer in the gut! No energy to photoshop this evening or I'd have put your face under one helmet and a breast under the other in the image below. hugs

    Exhale, my friend. Chemo #1 is done. Huge hugs to you for your bravery! Well, huge hugs to you anyway but especially for your bravery waiting and having to travel for day 1.

    How did you like your port placement? To be honest, it looks easier to access than mine and looks like more of a straight line to the destination. Given an option, I think I'd go with yours. I don't think either of us were given options though.

    Did your nurses take great care of you? I hope so! I think their skill and kindness makes all the difference in how chemo days go.

    I noticed the hives on my arms after I did the unthinkable. I scratched them. I quickly grabbed the hand sanitizer and Neosporin as I went into a state of panic. I haven't taken a shower yet this evening but will check for others when I do. I also noticed the skin on my face breaking out and have and a weird taste in my mouth since Sunday. More salty than metallic - the same taste I get when they flush my port. None of these are all that upsetting. Easy to live with. Let these be the worst of them!!

    I had a tiny something something (sebaceous cycst) in the same breast as my tumor. They didn't biopsy it but was thinking I'd ask them to remove and biopsy it when I go for surgery later in the year.

  • catm
    catm Member Posts: 130
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    Hi Njdogmom-


    just woke up from a big nap. Anticipate today being easier than the next couple but fingers crossed.

    Thank you- LOVE the image of boxing & kicking cancer’s butt! (#ss!)

    My port is not around my neck (as I thought) but more a few inches down from my collar bone where the second incision is. I like the placement but it’s right where my bra strap hits- still tender- so I’ve been going braless with dark camisoles, cardigan on top. I should just go topless at this point!

    I did have a scare (small, but still) when chemo nurse said “the doctor” needed to approve the use of the port. (Had an X-ray yesterday.) She did. Phew. Chemo nurse was very nice so that helped for sure.

    I’m so sorry about your hives. I have recently had a terrible case & it was awful. Will you call the oncologist? See what you can do?

    Also- I think that’s a great idea to have that other something/cyst removed.

    Hope you can sleep tonight & get some relief from the hives.

    Sending hugs your way!

  • iamnobird
    iamnobird Member Posts: 229
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    Catm: Looking awesome and you go, you! Hopefully feeling much better than you were after you got through this first round. Will you stay in Houston for a bit? I think you said your husband arrives Wednesday which is great. And yeah. I have heard that Penguin is very labor intensive. I think it will be easier to let the nurses handle the digniticap.

    Njdog: I am sorry. Yeah. It sounds like what I have going on. It seems to be a fairly common taxol reaction and hopefully it stays under control for both of us. I have a small patch near an eye now. Lovely, lovely. But I am with you. This is all bearable.

    I had cysts in both breasts. But I always have had lots. After an unclear mammogram, I was medevaced from Beijing to Singapore about a decade ago to see a breast specialist. There they discovered like 20 micro cysts on my right breast and 15 on leftie. All benign. They gradually reduced, but have always been present. They got larger around Christmas and made me schedule my annual exam and mammogram here in Helsinki for late January. It is easy to put stuff of when you move as much as we do. Anyways. I had the large one in my right aspirated and it was benign, but they also saw some teeny calcifications. They debated the biopsy for a week or so, then decided to go ahead. Sigh. That was the beginning of my journey in February. The teeny 6 mm spot of calcifications was a 9 cm patch of DCIS. And hidden invasive was there behind the nipple. Anyways. They also found a cyst in the breast that I kept and tested it during surgery (I had that “good” breast reduced to match my DIEP one) and it was benign. The good thing is that they expect most of mine to go away with menopause and hormone blockers.

    Today is my energy day. I am feeling pretty good this morning. Up a bit early with the steroids.

  • iamnobird
    iamnobird Member Posts: 229
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    Sharing this yoga practice that I found from a cancer survivor. She has special modifications for post mastectomy and also some yoga for lymphodema prevention.etc. I am going to give one of the relaxing yoga practices a go this morning. Because my DIEP was only 2 months ago, I still have to be careful but want to start to do something. My arms are especially wimpy right now. And abdominal exercise is still a no go as that area is still healing. And my worst fear is ripping an incision or something internally during chemo!

    https://youtube.com/%40yogawithleonayogaforbreastca

  • njdogmom
    njdogmom Member Posts: 181
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    So glad you are joining me on the yoga journey iamnobird! Even with the little bit that I have been doing this week, I'm finding I feel strong and calm. What a great find the yoga site is! I'll be using it over the coming days to move past mountain pose.😊 My goal was to get to sun salutations by the end of the summer. The modifications suggested may make that happen much sooner.

  • iamnobird
    iamnobird Member Posts: 229
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    Great! How is everyone feeling today? I was on a steroid induced cleaning spree and am now exhausted lol. Resting and watching tv at the moment.

  • catm
    catm Member Posts: 130
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    Good afternoon gals!

    Yes, feel SO much better with number 1 behind me.

    I hope you found my photos humorous. I hope so as we are all in the same boat. I sent to my brother and they upset him because I looked so vulnerable. I'm glad he told me and I am not going to share with anyone else. Apologies if they were upsetting at all.

    I felt good yesterday and today, slept well. No nausea, thankfully. I, too, am on a steroid high and can feel my cheeks developing beautiful Raggedy Ann-esk red apples on each side. I think I could fry eggs on my cheeks.

    My daughter wants to try some yoga when she gets home. You are both inspiring me.

    njdogmom: How are your hives today? Sounds like both your (and Iamnobird's) rashes are getting better?

    Iamnobird: Appreciate you sharing your cyst journey. I am really glad that MD Anderson is persisting in trying to get some pathology on it. Similarly to you, 5 weeks ago the radiologist in ATL with the FIRST MRI recommended an MRI guided biopsy on the cyst (left breast, so far no cancer). Well, glad to be getting it done, especially with what you have told me.

    Final note: Had no idea Houson was such, well to be blunt, an ugly city! The weather has been gray and ugly too. My son tells me (he works in real estate private equity so he knows) that it is because there is no zoning. We are having fun together. He has great energy! We watched "Hellboy" last night- very fun movie (name is deceiving).

  • iamnobird
    iamnobird Member Posts: 229
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    Catm: I actually think that you look great. Not vulnerable at all. You are there in the ring throwing it down. And you look really great doing it:). So please don’t apologize for sharing. It is awesome that you are having this time to connect with your son. And yeah. Houston is a really ugly city. There are some nice areas in the older part but it isn’t that attractive. My husband is from there originally 😂.

  • njdogmom
    njdogmom Member Posts: 181
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    Your photos are not upsetting at all catm! You looked pretty darned glamorous! And yay on yoga!

    I missed your previous post iamnobird. That sounds like a nightmare - to be medevaced from one country to another. New sets of doctors etc. I am so glad they erred on the side of caution and did the biopsy. So much needs to be improved so that women are screened earlier and with more accurate diagnostics. Did you see that now it is recommended that women start getting mammograms at 40?

    Glad you enjoyed your cleaning spree iamnobird! I seem to manage to fill the trash bin every Friday which is a great thing. I've been purging stuff during the post chemo steroid buzz. The dogs give me the stink eye every time I go near their toy basket now. I start my weekly steroid journey tonight for tomorrow's chemo and then I get more steroids during chemo. And then I stay up until 2AM making bento boxes because … steroids. 😆

    Adding Hellboy to the watch list for this week's crash! I binge watched Queen Charlotte on Netflix during my crash last week. I had to go back and replay several episodes because I fell asleep. I really liked it. I thought the backstory added depth to the character.

    Hives are doing their hive thing. Not terrible. I found more on the back of one leg. I'll mention it to the oncologist tomorrow. I just keep being thankful. So many people have much worse side effects. I can live with fatigue, brain fog, a weird taste in my mouth, hives, adolescent skin etc. I suspect we will add to our lists over the weeks but we are a bunch of tough cookies, as my mom used to say.

    Fingers crossed for no port issues and available carboplatin tomorrow!

  • iamnobird
    iamnobird Member Posts: 229
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    Njdogmom: Singapore was a dream though coming from Beijing. So safe and clean and beautiful. And the breast clinic was amazing there! They have such good doctors. Luckily there wasn’t anything wrong and they established that on my first day there. I went immediately from the doctor who did an ultrasound in his office and declared we weren’t dealing with anything cancerous and straight to imaging where they did tomography and a mammogram and a really thorough ultrasound. Then my husband and I went to the night zoo and had a couple of days to relax on the beach before we returned to subzero Beijing. So super scary at first, but then a good time.

    Queen Charlotte is on my list also!

    Wishing you all of the good vibes today. Easy port access, carboplatin and a continuance of minor side effects. I am glad the hives haven’t worsened. Mine haven’t returned since I had the premeds on Tuesday (knock wood). I took like a local equivalent of Claritin yesterday and will take it daily. Fingers crossed.

  • iamnobird
    iamnobird Member Posts: 229
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    Njdogmom: Thinking of you today and hoping all goes well and smoothly ♥️!

  • catm
    catm Member Posts: 130
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    Hi gals-

    Thanks for kind words about my photos, trying to keep a sense of humor! In fact, my son dubbed this area in Houston “Medical Disneyland” & we named the Mays Clinic (where I’ve been going) “The Magic Kingdom”!

    I’m literally in the Magic Kingdom now, about to get the biopsy & marker business DONE!

    Njdogmom: good luck with treatment today. Sending hugs. Oh & aren’t our fur babies hysterical? Loved yours giving you dirty looks! My dog eats cat treats just as a power move with the cat & the cat cuts the dog off on the stairs as a power move.

    Hope those hives are getting better & your rashes. Speaking of indignities, I just love getting weighed all day long- the kilos helped at first but I know the lbs conversion now!

    I’m still doing ok from chemo 1, thankful & just tired.

    Gotta say it still feels surreal to be where I am & to be on this journey- but why not me, right?

    Hope you have great days!

    Hugs

  • iamnobird
    iamnobird Member Posts: 229
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    Catm: So glad you are still feeling well. That is the best news! And my cats totally cut my dog off on the stairs as a power move also. And eat her food. Her main source of power is the protection of the humans.

    Good luck on the biopsy! Getting it done. Hoping it is quick and easy.