Starting chemo February 2020
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I'm so sorry tamijean, I hope surgery is smooth and they can get the tumor out of you.
I think going into the 5th treatment of TCHP does feel a little depressing, it feels like we should be finishing and yet it's only the second to last treatment. It's a very long haul, especially with the stay at home orders.
Speaking of, how are we all feeling about what the next year looks like for us cancer patients? I opened my computer this morning to a headline about cancer patients having a 3x higher chance of dying from Covid. It is so depressing. I feel like I'm such a strong, healthy 43 year old, and until January, I was the epitome of health. I have 4 kids, and we have been isolated for 6 weeks. My husband does grocery runs, but that is it. My kids have been so good about it, but I'm not sure how we go about easing into regular life with the virus still out there. I'd love to hear how all of you are feeling about it, especially those with younger kids (mine are 7,7, 12 and 14). I'm thinking as the weather gets better, I start to let them ride bikes with neighbors or do some outdoor hangouts where they socially distance themselves. But I'm cancelling summer camps, indoor swim lessons, etc.
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Fab4mom - like you, before starting chemo I was healthy and in rather good shape - I worked out 4+ times a week, had just built up more muscle (probably now lost from sitting on my ass for the past 6 weeks) - relatively young (45). I also have young kids - 8, 11, 13. And I'm also in IL (western burbs). It sucks that I am now weaker and can't run for more than a few minutes - but I feel like I at least went into this from a good place - healthwise - and that can only help. I asked my oncologist - "how immunocompromised am I, like really" and she said that, thanks to the Neulasta, not too much. WBC may be less "quality" but they at least the quantity is there. So, while I certainly worry about COVID (overthinking every random cough I make) I like to think we are not as high risk as say, lung cancer. But still - thought of catching it and going to hospital by myself is terrifying.
While I hope summer softball season starts back up (oh, to sit outside and soak up the sun, have friendly conversations with other parents, complain about the port-a-pottys - I'd be a frequent user of those for sure!) - I would probably sit in a camp chair off to the side rather than the bleachers and I'd avoid those moms who hug. I see myself maintaining some amount of distance from people for a while - even once quarantine is over. Maybe continuing with grocery pickup vs. in-store shopping, staying home more. But my husband works at a hospital and I feel like being exposed to COVID is inevitable - whether now or later in the summer or in the fall.
I do feel like I'm sadder lately - and I'm sure its due to quarantine. I feel like I could get through this business easier if I could otherwise lead a normal life. Instead, I can't go out with friends for dinner, drinks, cancer bitch sessions. I can't have family come help when the chemo knocks me down. I can't take advantage of the free services at the local cancer charity that I was looking forward to - massage, yoga, art therapy with the kids. I can't properly greet and thank people who bring meals to my house. I can't go to the gym to keep my body strong to help fight this and deal with the chemo. I can't play tennis. I can't be distracted from "I have cancer" by the daily rituals of kid activities, softball games, driving in the car. It's just me - at home - trying to keep the kids on task - having cancer all the time - and not much else.
On the plus side - with no school, I can sleep in. And I do.
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Morrigan- I’m so sorry you can’t get your echo. That’s crazy! I’m glad to hear your surgery will be on schedule.
Tamjean- I’m praying you will have a successful surgery and the doctors will find the best treatment plan for you.
Fab4mom- We picked a lousy time to fight cancer, didn’t we? At my appointment with my MO right before my last infusion, I asked her how long my immune system would be compromised. She told me at least a few months post chemo and that some say it takes a couple of years for it to fully recover. Also radiation will compromise my immune system. So I’m going to continue to lay low even as my state starts to reopen this Friday. I feel bad that my daughters will have to continue to isolate. They have been handling this amazingly, but it’s going to hard for them to stay home when everyone else is going out. Your plan sounds good. I think I’ll also start with outdoor meet ups.
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micdpowers- Yes! I totally feel the same way. I’ve been able to remain positive, but I do feel a bit “ripped off.” I didn’t get to have lunch with friends on my good days. Someone texted me today to say that we’ll need to celebrate finishing chemo when this is all over. It’s just not quite the same if we do it months from now. I’ve been greatly blessed and have nothing to complain about, but still.
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Fab4mom- my kids are 6, 4, and 1.5 years old. I’m exhausted having them home with me all the time, doing school with my kindergartener, and I’m working/“teaching” full time (I’m an elementary sped teacher). They understand yet don’t really understand social distancing so I don’t think we could do outdoor gatherings with others without them getting close to others. We just can’t risk it with my immune system. It’s so isolating. I agree with you micdpowers, about feeling sadder lately. Without the covid crap going around I think I’d also be able to at least participate in more “normal” activities with friends and family. I try to stay in the present but it’s hard not to think about how long this is going to last..
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Sitting for treatment #5 right now, they almost pushed it out a week since my Plateletts were down to 82 but my MO said to reduce the Carbo dose (by 10%). Keeping fingers crossed since I'm almost at the end, I'm going to be crushed if #6 gets delayed.
I asked (out of curiosity) if I would get a nuelasta shot after #6 and they say it's standard. I was hoping to avoid it but, I don't really have that much pain, a little muscle cramping.
I talked to them about my Echo and, they're going to send it to the local hospital, as they're the only place in the area that does them at this time. I should get it sometime before #6 (depending on my blood counts).
When I saw my BS on Monday he mentioned the ironic benefits of being on Chemo during COVID. I had read the article (posted by Jessie123 in the Breaking Research thread)
https://smw.ch/article/doi/smw.2020.20246
"Interesting article on chemotherapy causing an immune suppression and the risk of ARDS which is what normally causes death in Covid19 patients. Actually, if I'm reading this correctly, it's good news for the immune suppressed group."
So there's some hope for cancer patients that if we get COVID we won't end up in the worst case scenario. That being said I have no plans testing it out
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Tamijean, so sorry to hear tumor is growing. Will be praying for clean margins on surgery. Have you had genetic testing? Are you doing double mastectomy? I had Chek2 gene mutation and opted for double mastectomy with no reconstruction and surgeon correctly chose to do complete axillary dissection on affected side. I have no regrets (actually like being symmetrical and not having to wear a bra) even though I am dealing with some lymphadema issues. Even though my cells were grade 2, the proliferation rate was 90% and they knew at least one lymph node was involved before surgery. Had "normal mammogram" in Sept. and initial diagnosis was 2 cm in Dec. There were "satellite tumors" which were connected together that brought it up to 5cm upon examination after surgery in January. I can relate to fast growing. Here is a verse that several people have shared with me during tough times:
"Don't be afraid for I am with you. Don't be discouraged for I am your God. I will strengthen you and help you. I will hold you up with my victorious right hand." Is 41:10
Keep us posted on your surgery if not too much.
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So far I've done four rounds to taxotere, herceptin, and perjeta. i am dealing with most of the side effects fine, but the fatigue is decimating. I've always been type A go-go-go and now it's as if i'm walking underwater and every step makes me breathe heavy. Is this normal? I do have an echo next week to make sure my heart is handling this. Ironically, other than the cancer I'm so freaking healthy it's not funny. I have two more texotere treatments, then just herceptin and perjeta for a while. Tell me it gets better... (i posted this elsewhere but im hoping forsome feedback here...
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Hi Joan - Welcome!
Did you do surgery already or started with Chemo? I noticed you're just getting Taxotere, no Carboplatin. Did your MO say why?
I'm number 5 (yesterday), I wish I could say the fatigue gets better but, I'm pretty sure I'm going to be running down until after my surgery in June (depending on who I talk to it can take anywhere from 2-6 weeks to fully recover).
If you had surgery first then after your 6 cycles of THP you'll drop to just HP and that's supposed to be much easier on your system. Not sure if you'll do Radiation.
If you did Chemo first then your next treatment will be based on the results of your surgery. If you have a pCR (patholgic complete response - all cancer gone) then you will go to HP. If you don't get a pCR your MO will probably switch you to Kadcyla for 14 cycles (10.5 months). Kadcycla is Herceptin attached to a targeted Chemo. This comes with it's own set of SE and can impact the heart, lungs and liver. 😕
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Joan Davies - I did four rounds of TC and the fatigue and other side effects were pretty bad for me after round 4. I'm two weeks out today and still get out of breath when doing simple things. I was a college athlete many moons ago and have tried to stay active most of my life but now, going up the stairs makes me winded. I hope your side effects don't get any worse. I am hoping it gets better soon!
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Welcome, Joan. I just had #4 of Taxotere, Herceptin and Perjeta as well. The side effects of #3 were more intense but this time, they seem okay so far. I agree with your comments on fatigue. It took me forever to summon up the energy to even take a shower today. Walking underwater is a great description. My echo is scheduled for May 13.
I had my “halfway through chemo” CT last week and all tumors have resolved. Yay! I’ll continue with THP for my last two infusions and then just H/P every three weeks for as long as it works. I’m good with the plan.
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morrigan 2575 - I just read your post about masks and ice chips. I literally laughed out loud — at myself. About an hour into my first infusion I began vomiting and continued vomiting for the next hour plus. I remember apologizing to the other patients because they had to sit there listening to me, but I have no idea where I put my mask.🤮
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MNSusan - Congratulations! That's wonderful news.
ByHisGrace - i really hate the masks, makes me feel claustrophobic. Sorry you had such a bad experience. My place gives me 2 anti-nausea pills plus something in my IV.
I'm grateful I've never thrown up, I'm attached to the dignicap machine so I can't move. If I have to go to the bathroom I have to get unhooked and have only 8 minutes to make a run. I just hold it as long as I can (about 6 hours).
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I had my first appointment with my RO. I’ll be starting radiation in a couple of weeks. Is anyone else getting ready for radiation
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Anyone that is currently or has went through AC tell me your experience. I’m trying to read back through the post but I’m not seeing too much on side effects. I’m currently on taxol just had my 11/12 infusion yesterday. I start AC on the 21 and I’m scared to death. I don’t want to throw up all the time. That’s the one thing I can’t stand. Taxol has been Okau for me but I have had some pretty rough weeks. I’m just scared to death of AC
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TexasMama- I’ll be meeting with my RO in the next month to get a radiation plan and looking to start in mid-June.
MNSusan- yay! That’s awesome to hear you had a great response! Are you still down south or did you make it back to MN?
Hray- my coworker just finished AC and my aunt did AC 3 years ago. Both found it to be manageable and neither had much nausea. My coworker actually just started TH and finds it has more side effects for her than AC did.
I go in next week for round 5. Trying to stay positive and remind myself that it means I’m one step closer to round 6, which is the end of the “tough stuff” (hopefully) for me. I had my MUGA scan yesterday but I’m still waiting on my results.
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I don't even know if I need an RO. I'm a little lost on that. Who made the decision about radiation? Your MO? Was it made after your surgical pathology? Due to Lymph node involvement?
I asked my MO after treatment #2 if I would need radiation and he said no but, I have no idea how he would know. I guess I'll find out after surgery, I know your body needs to recover for 1-2 months after surgery before starting radiation so if I need it I guess they'll tell me then
Got an appointment for the 12th to get my Echo, I have to go to the Hospital, they're the only ones open and, performing Echo. Not too happy about that to be honest but, I have to get it done
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My MO determined the need for radiation and it is due to my lymph node involvement that was found post surgical pathology. I’m a little nervous because I went direct to implants, which I’ve been happy with, but have heard there can be problems with implants and radiation.
My cancer care center is attached to the local hospital, so that’s where I got my MUGA scan yesterday. It was eerily quiet there compared to the first time I went! I was the only one in the scan/nuclear med dept compared to last time 3 months agothe waiting room was quite packed!
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Ajminn - Thanks! Sounds like I'll find out post surgery if I need radiation along with whatever else they decide (Kadcyla vs HP). So much to look forward too 😛
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hray1993: I did 4 rounds of DD AC followed by 4 rounds of DD Taxol - had my very last infusion this past Tuesday. AC was definitely easier for me than the Taxol was. There are a lot of meds that your doctor/nurses can prescribe for nausea and they will probably give you a prescription or two when you leave after your first infusion of AC. The key is to stay ahead of nausea - if you even start to wonder whether or not you should take an anti-nausea medication - then take it. I felt somewhat queasy at times - but never felt anything close to nausea. Ginger Ale was definitely my friend. Good luck!
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Congrats Maddy on finishing Chemo!
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I’ll have to keep that in mind!! Thank you and congrats on finishing chemo!! That’s so exciting
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I had a client of mine say the most insensitive thing to me yesterday. We build log homes and with the lockdown we have not been able to work on residential homes. This client is getting very frustrated and blaming me for her house not getting finished. With my surgery moved up to May 6, my husband will have to be around for the first few days. I have no one else to help...anyways this women said to me “I sure wish you didn’t get sick until after my house was finished” I started to cry, and told her I wished I didn’t get sick at all, and then hung up on her....
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@tamijean - Fuck that Selfish Self Centered Bitch! 😡😡😡😡😡😡
I'm so sorry you had to deal with that, it's uncalled for but you're going to beat this and she's still going to be a miserable bitch.
Pardon my swearing
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Maddy83f - Congratulations on finishing your DD Taxol. I did DD AC first and am now 3 weeks into 12 weekly Taxols. Will be happy to be finishing up in July. Hope you are feeling OK! We have had more sunny days lately and getting outside for walks really helps me.
hray1993 - Like Maddy, the IV anti nausea meds (I got Aloxi and Cinvanti) prior to chemo drugs kept me from feeling like throwing up. Once I felt a little weird on the 2nd day after infusion and took an ondansetron 8mg tab that was prescribed and didn't get sick. I didn't feel much like eating and chicken noodle soup and jello were my go to foods on the 2nd and 3rd days after infusion.
For me the main side effect I had to manage was constipation from anti-nausea meds. After 1st round when I found out that was how I reacted, I would take 3 stool softeners every morning for 4-5 days starting on the morning of my infusion (Docusate sodium 100mg/pill) Then before bed or in middle of night I took supplement called Calm by Natural Vitality (Magnesium 325g) It is a powder you mix in warm water and it fizzes and comes in yummy raspberry lemon flavor. In addition to helping with constipation, helps with sleep and muscle soreness which were also issues in days following chemo. After I started that routine, my digestive system still slowed down but wasn't hard and painful when got moving. I also avoided mouth sores by sucking on ice during 30 min of doxorubicin infusion and rinsing with baking soda & salt water solution (4oz warm water, 1 tsp baking soda 1/4 tsp salt; kept in tea cup and used throughout day after brushed teeth). Hope all goes well for you!
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Thank you guys for the replies. You probably wondered why I posted here and I didn’t realize my diagnosis was set to private. I’ve been down the cancer road before back in 2011, that’s when I had my MX. This time is just chemo right now to shrink all the tumors. I’m not really sure why THP was prescribed, I’m assuming it’s pretty standard for my stage. It’s helpful to read what you are experiencing so I know what to anticipate. I’m learning that days 2-9 after chemo are the worst, then I slowly get back to “normal” only to start all over again. The one thing I can’t tell is whether the reactions are chemo related or cancer...
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hi Joan - yeah with TCHP my bad days are 4-7 (for me that's Sat-Wed) and then I slowly get back to normal. By day 14-21 I feel great, only to repeat the process.
It is bad to tell what's Chemo and what could be something else. I get a cough/congestion during my bad days and I always start to wonder is it Chemo or Coronavirus or something else?
I'm sorry you had to go down this road again. I hope the Chemo helps along with the other MBC drugs
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Tamijean- Wow! I can’t even imagine how she could say something like that! I agree with Morrigan’s response.
JoanDavies- Welcome to the group. I’m so sorry that you find yourself here again. I hope the chemo is shrinking the tumors.
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May the 4th Be With You!
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Tamijean - I am so sorry that the client was so incredibly insensitive. I can't imagine someone being so selfish. I hope your surgery and recovery go very smoothly.
Joan - hope your treatment goes smoothly. I had TC treatment and it was pretty tough for treatments 3 and 4. I'm 2.5 weeks out from my last treatment and the side effects are still here -- some have gotten much better (nausea) while others are worse (extreme muscle weakness and cording). I didn't have issues with mouth sores. Praying your treatment shrinks your tumors and stops the spread.
Virtual hugs to everyone enduring this misery.
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