July 2020 chemo club
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Hello - I hope you veterans of chemo can help me. I got my port yesterday and the port is not too bad but the BS also cut me on my neck and I guess threaded a piece of it through. I have this 4 inch "tube" running down the inside of my neck to the port. Is that normal? The port itself looks pretty good.
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I also have a catheter in my neck running to the port. It’s creepy feeling, but it doesn’t actually bother me. I wish they had done a better job explaining the surgery to me so I wasn’t surprised to find it there once I recovered.
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marie914 I have a port and the tube also. Totally creeps me out. I won't touch it except to put the numbing cream on before chemo and I use a q tip for that. I cannot wait until it can be removed!!!
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Thanks Iamloved! I just didn't expect the port to go up my neck like a bulging vein. The ones I have seen I guess were just the port and I never saw the thing up the neck like a bulging vein. The port looks okay. I see the PS today for a fill so I will ask her but I know it isn't her thing. Friday I see the BS again for a checkup on the port. Then Saturday I leave on a week's vacation. It is a 3 hour drive. I hope nothing happens.
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marie914 It should be fine. I couldn't swim for the first few weeks as I recall. Enjoy your vacation.
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KMom, I hope you're feeling better - or less fearful anyway. I haven't much thought about what it will be like to have those scans yet.
Everyone else, I hope you're having good weeks. I'm sitting in my infusion center now trying to catch up on all of the things I feel like I've forgotten. Is anyone else experiencing "chemo brain"? I don't think I've seen anyone else mention it on this thread, so it's kind of making me wonder if maybe mine is not chemo-related after all.
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I’m not sure if I have chemo brain, but I wish I would get it because there’s some evidence that people who experience it have a lower incidence of brain mets, which is one of my fears. So if you’ve got it, consider the bright side that those drugs are getting to your brain and helping in the long run! I lose my train of thought and find problem solving especially draining, but I’m also generally exhausted so I’m not sure what’s what!
Got the results of my MRA, which was looking for the cause of my weird tinnitus. (Carboplatin can cause tinnitus and hearing loss, but I don’t have hearing loss, thankfully, and this is a different kind of tinnitus.) Everything was normal, so 2020 is officially the year I didn’t ALSO have an aneurysm! Woohoo! What a great year! So now they think it’s related to blood pressure. So far it hasn’t kicked in this round, which is fantastic! Also got the results of my echo, to check for heart damage from this regimen, and it was normal.
I’m so bored with cancer. Not that I want it to be more exciting! But ugh. So sick of this!
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I also want to celebrate my last chemo, but will probably put it off until I actually feel better. One of the things I’m most looking forward to is sushi. I’ve missed having it as an option the last few months. Although with Covid surging yet again, it will most likely be takeout rather than eat in.
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Yes! Sushi! I miss it so much!!! On another distantly related note...how about wine and chocolate and...sugar in general? Anyone else strongly estrogen positive? Have you cut that out completely?
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My last chemo was today! I'm feeling great! (I know most of that is the steroids, but there is an incredible emotional high as well.) I'm going to our local cupcake shop tomorrow and am going to celebrate. (You all inspired that celebration.) Just keep putting one foot in front of the other. We are getting there!
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Yay, Jenny!!! I am excited for you and here's a virtual bell 🔔 to mark the end of your chemo infusions. Celebrating with a visit to the cupcake shop tomorrow is an awesome way to celebrate. Enjoy! 🎊🎉🧁🤗🥳
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jenny2318...🔔🔔🔔🔔🔔Ding Ding Ding. Congrats! I am one week behind you and definitely excited for that day. The journey continues but the you have reached a plateau. Hope your next few days are uneventful!!!
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Congrats to those of you finishing chemo!!! I’d say celebrations are definitely in order!
Susiemommy - I wonder about sweets too. I’m highly estrogen positive. I’m not worrying about it right now but know I’ll probably need to make some adjustments once treatments are done.
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Yay Jenny2318!!!!! I bet that feels amazing!
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Yay, Jenny2318 and everyone else who’s finishing up! 🤩🌟🥳👏
Two questions for the group.
1–to those of you who are experiencing anemia, do you know what hemoglobin threshold your providers suggested for transfusion? My levels have dropped again and I was told to do some research so I know what I’ll want to do if I’m borderline and am offered a transfusion at my next appointment. My current thinking is that I’ll only consent to one if I feel truly miserable or if they tell me that bad things will happen if I don’t!
2–to those of you who have a biopsy-confirmed positive lymph node and are doing neoadjuvant therapy, has your node shrunk since you began chemo? I had a good report from my BS who did an ultrasound after two cycles and found nothing of the original tumor to measure, but this damn lymph is freaking me out.
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I am so frustrated right now. I had to have another infusion of magnesium yesterday. During the infusion I got sick...vomiting and diarrhea. The diarrhea continued all night every 45 minutes to an hour. Like clock work! It is still with me this morning and I feel like I am on day 5 of my infusion instead of 17. Wth? Doctor wanted me to start oral magnesium but now I can't because of this big D. The nurse in the infusion center told me to plan on coming in weekly for a long time to get magnesium. Our bodies just don't absorb it once it's low. Oh yea! I want to say enough and stop the chemo and let my digestive system start to heal. If it is not too late for that😠 I was feeling so good this week and now this. TIRED OF BEING SICK!
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🔔 🔔 🔔 I rang the bell yesterday! And cried happy tears as I was leaving! What an emotional day! I wish my family could’ve been there with me 😩 Stupid covid!
Best wishes to you all who are finishing up and tapping out!
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Oh iamloved, I’m so sorry! What an ordeal! That sounds miserable! I hope you are able to sleep a lot this weekend and let your body heal. Better days lie ahead.
BlusteryDay, YES!!!!!! Hurray!!!!!!! 👏👏👏👏
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iamloved that sounds absolutely awful and beyond frustrating. I’m so sorry you’re going through that. Do they know yet when they can continue your infusions? Or is it just all on hold indefinitely until the magnesium situation is resolved
Congrats on finishing BlusteryDay!!! That’s very exciting and I’m jealous.
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Iamloved, that stinks. What even causes low magnesium? I've heard several people in my infusion center being talked to about it, so I guess it's kind of common. I'm so sorry. Do they go ahead with your treatment?
BlusteryDay - go celebrate! Celebrate for all of us. So happy for you,
AnnaTheBrave, the nurses told me they usually do transfusions when hemoglobin is around 8. Mine was below that that day, and my doc just said to hold off and see if I rebounded by the following week (which I did), so I thankfully haven't had to worry about that since. I will tell you, I have tried everything I know to try to get my RBC up. I don't even really care for red meat, but I have become a big carnivore! And trying to push my running as much as I can -harder than some might think when you're so tired to begin with. I hope you're doing better with the big D.
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BlusteryDay 🔔🔔🔔🔔🔔 Congratulations 👏👏👏 such huge day!! Emotional as you said but what an accomplishment for you. I pray you never have to use chemotherapy again! 🤗
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Susiemommy...my Dr says it is from diarrhea depleting the body of electrolytes and minerals. I read yesterday coffee is bad also and I have recently been ae to drink coffee again so I will cutting that out. I just hope I make my blood counts on Wednesday for my last treatment on Thursday. I couldn't eat Friday of Saturday so I need to get some food in today.
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BlusteryDay, I am excited for you that the chemo has come to an end. 🔔👍🏻🎊🎉🤗 Best wishes to you!
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Iamloved, this sounds so miserable! I am sorry to read you are experiencing this troubling side effect again. I hope your infusion on Thursday goes ahead as scheduled. 🙏🏼
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Brittonkb, I hope all is going well with your weekly Taxol infusions!
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blusteryday...congrats on finishing!
Iamloved...sorry about your magnesium. Just think you’re almost done!
Today: I finished! A week late, but I’m really hoping that extra week of recovery will help and I won’t be so run down this time! My infusion center didn’t have a bell...but I’m glad, I might have cried. Instead I walked out of there like it was any other day. I’m quite tired, I’m going to try and take a nap before I need to take my steroids. I still don’t have an appointment with my surgeon to do a consult. My infusion nurse called to check in as there was a note in my file that he wasn’t doing breast surgery anymore and they had me scheduled with another surgeon. Since I had already consulted with my original surgeon and he installed my port, I am able to meet with him. They are coordinating with the plastic surgeon and getting an appointment set up. I’m ready to move onto the next step. I would like to wait until after thanksgiving...and hopefully be able to get it done right after, so I can still somewhat enjoy Christmas. At any rate, my 39th bday (dec 14) will probably not be much fun!
I hope you all have a great week!!!
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hello everyone! sorry I’ve been MIA. I feel like it’s been a rough few weeks. Just down in the dumps. I have read all the updates since I’ve been on here.
I have my 6th infusion scheduled for next Friday. I’m into my 2nd week after my 5th and I’m doing okay. Just dealing with my face rash. I got my surgery date and it looks like it will be dec 1.I’m terrified to get my pathology report after surgery. I asked my doctor about what they do with the results and chances of getting more chemo if there is residual cancer cells. I’m not sure if I heard her correctly but she said 60% chance for more chemo...6 months worth. Has anyone else been given news like this??
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Nottoday— I asked in the Kadclya forum about the percentages of getting complete pathological response with chemo before surgery and someone said complete pathological response happened about 60% of the time. Maybe that’s the number the nurse meant? (I asked the kadclya forum since that will most likely be my next treatment option if I don’t get complete response.
I meet my new oncologist tomorrow and I have a lot of questions about future treatments as I try to set up my health savings for next year. I’m on an FSA plan which means only $500 rolls over from year to year, so you have to estimate pretty closely or lose money. It makes me mad every time I think about it, but I’m still grateful I have it as an option.
Chemo #5 is Friday. I’m jealous of all of you who are finished or almost finished. I meet with the surgeon on November 18th and they expect my surgery will be the week of Christmas or the week after.
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Iamloved, I hope you are having your last infusion of Taxotere and Carboplatin today!
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Nottoday, sorry to read you have had a rough few weeks. I hope you have someone to talk to and the face rash is clearing. In answer to your question: The medical oncologist I go to said that if the surgical pathology report indicates remaining cancer cells, then the Herceptin infusions will be replaced with Kadcyla, a Herceptin/chemo combo. I was hoping if the chemo reduced the tumor and the breast MRI showed nothing, there would be no surgery. However, the oncologist said there will still be surgery for a sentinel node biopsy and to remove tissue from the area where the titanium marker was placed during the core biopsy. Hopefully, we will get a good report and not need the Kadcyla!
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