July 2020 chemo club
Comments
-
I hope today is a pleasant day for everyone and you have a nice weekend, too.
Iamloved, great to read you do not have the lower g.i. problem this time. I hope the nausea, fatigue and numbness in your toes are better soon.
Kimintx, sorry to read your infusion was postponed.
Smichaels11, great to read your infusion went well.
Melbo, I agree with you about being in awe of the women going through this with children at home! I am glad to read the Imodium is helping your g.i. side effect.
AnnaTheBrave, how are you feeling since your second infusion? Great idea to have your 5-year old cut your hair! You turned what is often frightening and confusing for children into a fun experience. Great to read that a couple other mothers here included their children, too.
Trynryan, how are you feeling now? Sorry to read that you are having a rough time with the side effects.
BlusteryDay, thinking about you as you go for your third infusion today. Sorry to read you are having a rough time with the side effects and those awful migraines.
Mtspacekace and others, sorry to read many of you are struggling with liquid intake.
Nottoday, thinking about you as you go for your infusion today.
0 -
Hi everyone!
I had my second infusion yesterday. The pre-chemo exam included a measurement of the tumor in the breast and it was half centimetre smaller since the first infusion which is not a big reduction compared to the reductions a couple of you have posted.
However, I was still excited because a CT scan in July showed multiple nodules too small to biopsy at 2-6 mm in both lungs so if those are metastatic breast cancer cells then some of them may be reduced in size, too, or gone. I feel hopeful!
0 -
Shar2020...That is great news! A reduction in tumor means the treatments are working. Thank heaven they are not growing especially when some of us have aggressive bc tumors.
2 QUESTIONS FOR ALL
1. Do you plan to have imaging done at some point before your chemo is completed to check the progress?
2. At what point in your treatments are you meeting with your Breast surgeon to discuss options?
0 -
I am loved- I have already met with the breast surgeon a few times. He has given plastic surgeon referrals so I will be meeting with a few over the next month. I will be having a double mastectomy in November or early December and this is mainly due to my gene abnormality. I asked about imagining at the end of chemo however due to me having a double mastectomy he said there is no point.
2nd infusion went good today. The Benadryl really puts me put. I’m hoping the vitamins and supplements help with some of these side effects.
For those struggling with white blood counts...are you getting the Nuelasta injection on your tummy?
0 -
Lamloved - to answer your questions I will have scans to check progress after I finish 4 infusions of my AC treatments. Then I will start the next regiment which includes Herceptin. I have done three infusions so far and meeting my surgeon in a week’s time. But she will need to see the final results after I complete all chemo which means in another 17 weeks to agree the surgery options.
0 -
Happy Saturday ladies! I hope everyone is feeling good with little or management side effects.
Shar2020 - The accountant in me is noticing that 1/2 cm is a 25% reduction in your tumor size after just one infusion. That is amazing!
I had my lumpectomy before chemo so nothing really to measure. However, had they known the true size of my tumor before surgery I suspect they may have suggested chemo first to shrink it.
Nottoday - I had the Neulasta patch on my arm after my 1st infusion. I assume same effect as having on the stomach. Without that, I can't imagine what my counts would have been!
I go for infusion #2 on Monday. Since I had my port done on the same day as my first infusion, I'm really anxious to see how I feel this time. I'll be grateful for a repeat of last time but time will tell. For now, I'm just going to enjoy the weekend. I'll ride around the golf course with my 13 yr old daughter and do some on-line back-to-school shopping with her. And I plan to watch some MLB baseball with my 16 yr old son. My husband and I have been enjoying walks at the park every evening. And our dogs are just plain happy to be around me whenever they can
Enjoy the weekend everyone!
0 -
Good morning, all,
I’m on day 4 of round 2, and so far it’s sort of “second verse, same as the first, a little bit louder and a little bit worse!” Nothing awful, just a little worse (more tired, more crampy, more irritable) than I felt during the first round. I’m hoping that my low point, which was days 6-8, isn’t drastically lower than the first round. Tingling in my hands and feet seems more persistent this time.
During each round, I come back about a week after chemo for hydration and during that appointment I alternate between meeting with my MO and her PA, both of whom I love (met with MO before treatment, met with PA after round 1, will meet with MO next week). On the morning of my third infusion (scheduled for 9/3, after they draw the blood work but before I get hooked up), I’ll meet with my BS for an ultrasound measurement. This appointment has been talked up to me as a big deal and a “feel-good moment” for everyone (because they expect the treatment to be effective). I imagine that they will determine a schedule for future imaging tests at that point—like, I think if it hasn’t shrunk “enough,” then at a certain point he might recommend mastectomy?
0 -
Brittonkb, thank you! I like the accountant's perspective...a 25% reduction! I hope you are enjoying your weekend plans with your family, and all the best to you as you go for your next infusion on Monday.
AnnaTheBrave, sorry to read this round has been tougher for you. Hope you are feeling better soon.
Nottoday, great to read your second infusion went well.
Iamloved, thank you! Yes, it is great news that the treatment is working and reducing the tumor. I am always excited when I read in someone's post that there has been a reduction in their tumor.
Responses to your questions:
1. All imaging scans were done soon after diagnosis and will be repeated again in November. (The cardio tests will be every three months.)
2. The breast surgeon was the first oncologist I met after diagnosis. I will meet with him again in November or December after all the new imaging results have been reviewed.
Wishing everyone a pleasant week.
0 -
Hello Everyone!
Just an update. I could not get my Chemo last week so I went in for my injection instead to boost my WBC. I had an appointment my doctor and she asked me if I felt my lump yet. I told her no because I was to scared. She told me to put on a gown and she was going to come back and have a look at the lump. So, as I put on my gown , I briefly skimmed the lump and I did not feel anything like I did before. I just thought it was all in my mind. Well, she came in and felt it and she could hardly feel it anymore . It was a 4 MM to her barely feeling it to a 1 or it could even be breast tissue and the lymph node was not swollen. The doctor seemed very pleased and excited. So, finally good news. We are not going to focus on the breast surgery just yet. We need to focus on the liver first. She mentioned having scans again soon. Ugh. I dread that!
I think I have decided to finally get my hair shaved this weekend. It is falling out constantly. I do not mind it but I just think it will hit me that I will look sick. I have not felt bad or have any bad side effects from my Chemo. (as of yet)
I love to hear all of yall's great and uplifting stories. Prayers for each of you.
0 -
Kimintx, praying for you, too, and thank you for sharing your update regarding the reduction in your tumor. That is exciting news!
Hopefully, you can have your next infusion soon. I am glad you have felt ok during the chemo without any severe side effects.
0 -
Thank you. Just taking it one day at a time!
0 -
kimintx...so happy to hear your awesome news!!! Best of luck with your other scans.
0 -
I go in for #3 tomorrow morning, and am feeling anxious and kind of scared...which I really have not had the past 2 times. I love my nurses, and trust them completely...but the fact that I’ve had 2 reactions to the Perjeta just has me nervous. The second time was much worse than the first...the heaviness in my chest and difficulty breathing is not fun. I’m having this awful thought that it’s going to be so bad I quit breathing this time. They are going to premed me with Pepcid and Benedryl this time...where the first 2 times they did not...so I’m hoping and praying for no reaction and a nice nap. It’s also my second anniversary tomorrow. And I shaved my head tonight...I’m just really super emotional tonight after looking at pictures from 2 years ago and of my shaved head.
Yayaya. It’s beautiful bald. But I’m still mad. I guess, what doesn’t kill us makes us stronger, and I’m not dead yet! I wonder how many years it’s going to take me to get my hair back lol...ill also never everthreaten my hairdresser that I’m going to shave my head. Ever again.
I need to put my positive pants back on, and wake up and lace up and get on with it. But sometimes I guess you just need a good cry and to feel sorry for yourself. Thanks for listening ladies.0 -
Mtspacecace — I haven’t been on here much this week, kind of down and a lot on my mind, but I read your post and had to reach out. I know what you are feeling. There’s a photo beside my bed of me and my daughter a few years ago, and it makes me feel sad somehow, to see it,even though they were happy times. I’m sorry you are feeling this way. I wish there were something else I could say, but I know there isn’t. Just wanted you to know I’m thinking of you and hoping good things for you.
0 -
Mtspacecace I hope your infusion is going well without issues today! I am right behind you with #3 on Thursday. I am finally feeling better the last few days. On Saturday I went on a 3.8 mile hike- it felt so good at the time but I was totally wiped out on Sunday. I need to learn to moderate my activities, even when I am feeling good.
Hope everyone has a good week.
0 -
Hi ladies, just checking in after infusion #3 last Wednesday. I felt crappy! I had an echocardiogram appointment today, so I figured while I was down there I would see if some additional fluids would make me feel better. I've heard of others doing it and it helped, so I called. They ran some blood work and determined that magnesium and potassium were low, so I ended up being there for 3 hours! I couldn't take the gigantic potassium pill they had, so in addition to the drip, I also need to up what I'm getting in food.
Then I received a call later this afternoon when I got home that my echocardiogram came back with reduced numbers. Something about 55% down to 45%? Not fully sure what that means, but I know they watch heart function closely because of Herceptin. But essentially, I have been scheduled for an MRI with contrast (I had one during my initial cancer workup) on 9/3, which will delay my 4th chemo that was supposed to be on 9/2. I am devastated. I just want to get this done and over with 😔
0 -
Hi ladies! I had my 2nd infusion of AC yesterday. I was pretty worried after my ANC count was only 640 a week ago. It bounced back and then some to 13,000! I was worried then it was too high. My MO explained that the Neulasta works for 2-3 weeks and so no worries. Feeling pretty good again. A little fatigue and heartburn are my only SEs so far
Shauna - sorry to hear about the additional testing and delay in your chemo. Hope everything comes out ok and that the delay is short. It must be frustrating.
Trynryan - good luck on Thurs. Great job with the hike! My MO was just telling me yesterday how important it is to keep moving. He had a cute saying but I can’t remember it now.
Mtspacekace - I hope you’re feeling better. I’ve heard from several women that losing their hair was devastating so you’re definitely not alone there.
I buzzed my hair on Sunday as well. Actually my 13 yr old daughter did it with some help from my husband. My 16 yr old son wanted nothing to do with it other than to watch. My husband is shocked how much he likes me with short hair. I may have to experiment with some short ‘dos when this is all said and done. The loss of hair didn’t bother me but I know losing eyelashes/brows will! I’m hoping they just thin out 🤞
0 -
I had #3 TCHP today. They premed me with Benedryl and Pepcid before I got Perjeta this time...and oh my what a difference! Instead of waiting to have the reaction (heavy chest, hard to breath, coughing) and then pushing benedryl...they gave it as a drip with some fluids. It didn’t knock me out, I didn’t have a reaction, everything went very well today. I feel as great as I have this whole time. I got the Neulasta on my arm again. The sun is shining and I saw a rainbow tonight! Sleep is still evading me tonight, but I’m just going to have to turn it off and lay in the dark until I fall asleep. I need it, and I have to be up for an appointment with my MO in the morning.
I hope all you ladies are having a wonderful week! Wake up. Lace up. And put your positive pants on!
0 -
I haven’t really checked in here much the last couple of day, mainly because I finally started feeling better and was busy doing a few things around the house and hanging out with my husband. I still take Imodium every day, but that seems to control everything and I am usually taking one or two nausea pills by the afternoon. Mostly though I feel a lot closer to normal and I have been enjoying that feeling a lot.
SMichaels — so sorry to hear about the complications and delays. That sucks so much.
Mtspacekace — glad giving the Benadryl ahead of time made such a difference with the Perjeta.
Brittonkp - I’m sorry you’re sad about your hair. It’s just one more bs thing about this whole cancer nightmare. I still haven’t gotten to cutting mine, but it’s slowly starting to fall out now so I’m not far from it.
0 -
Last Friday was my 3rd round of AC. We made a couple of changes... They stopped the Zofran, added granisetron (kytril) as my antiemetic IV pre-infusion medication, added phenergan as my Zofran alternate, and it seems to have done the trick. I didn't experience the horrible brain fog that I had the first two cycles, nor the horrible constipation, and most importantly... NO MIGRAINES (so far). I alternated phenergan and compezine every 3 hours for 3 days as my antiemetic regimen.
As a result...I'll never look at Zofran the same again, as a nurse or as a patient. I've always thought of Zofran as a neutral drug...little side effects, etc. I didn't realize how horrible they really are until I DIDN'T take it.
Now, the Dex side effects... ugh. The insomnia was awful and when I stopped the comp/phen, the "wired" insomnia came on full force. Thankfully, those side effects are short-lived and I was able to sleep for 12 hours last night!! WOOHOO!!!! I'm feeling like I am "on the mend", other than the muscle pain - but for that, I've been taking epsom salt baths. I know there isn't any scientific "proof" that the epsom salt works, but hey...it makes my skin soft and the pain go away for me, so I'm going to keep it up.
I'm starting to get nervous about my DD Taxol infusions that are looming in the near future. Is ANYONE here doing DD Taxol (no carbo, etc)?
BrittonKB - That's great that your ANC bounced back! I hope your second cycle goes well.
Melbo - I'm so glad you have a few days of feeling "normal" and spending time with your husband. It makes all the difference, mentally, to have the recovery days.
Kimintx - wonderful that the tumor has shrunk! Awesome news!
mtspacekace - You are beautiful! I am still trying to embrace the "no hair" look, but it seems to unnerve people. LOL! Being on AC, my hair hasn't completely fallen out, so I have a sparse head of "stubble", which is more of an annoyance than anything.
0 -
Hi there,
I haven't checked in for a while. Going into TC #3 of 4 this Friday. 'Down the rabbit hole we go...'
I was feeling good for the past week, and we even took a quick getaway to some airbnb place in Sonoma. It was nice and a much needed change of scenery, except we've had a 108 degree heat wave, followed by thunder storms, which together caused the fires all over California that you are hearing of on the news. So for the past couple of days the air here smells like smoke and you can see some ash bits on the cars.
After I felt great on our getaway, I got on the scale and looked at some photos and it finally hit me how bad I look. My hair is very thin on top (cold capping is working so-so), I think I'm getting moon-faced from the steroids and I've gained 5 pounds. My weight has been zigzagging so much every cycle, I drop 7 pounds on weeks I feel bad and then gain it all and a bit more on the weeks I feel good. And It will be harder to lose it when it all ends because of the hormonal treatment. Ugh.
This cycle will probably be harder than the previous ones, now my boys (7,9) are home for distance learning and need my support and help daily. I hope my side effect are like last time, so I can at least pick myself up a bit every day to help them out.
I was glad to read about some of your tumor reductions, great news! I hope everyone else is also doing ok.
0 -
Kukalona I’m with you on Friday morning except it’s only #2 for me. Not looking forward to it. MO says it won’t be worse than the first. Hoping he’s right. Also glad to read about reductions. That’s great news. And mtspacekace glad your last was so much better.
0 -
@Kmom57 - good luck tomorrow. If it help - my second was easier than my first cycle. Knowing what to expect helped and managing the meds better too. I also feel like it was less intense, but that might be in my head. I hope this cycle will go easy for you.
0 -
Good morning, everyone.
Kukalona and KMom57, thinking about you as you go for your infusions today and I hope all goes well.
BlusteryDay, I am happy to read “NO MIGRAINES" in your post. That's great news!
Melbo, I am glad you are feeling better and closer to normal.
Brittonkb and Mtspacekace, great that the infusions went well.
Smichaels11, sorry to read that you were not well after your last infusion and the next one will be delayed for the MRI. Postponements and delays with the infusions are so disappointing and frustrating!
Trynryan, I hope you are doing well since your last infusion.
A new side effect for me since last week's infusion has been dizziness so I stayed in bed on those days because of a risk of falling. It's better now so I hope that's the end of it.
Wishing everyone a pleasant weekend.
0 -
In the chair. Has not started well. Pretty anxious. Not feeling confident.
0 -
KMom57: Many positive vibes to you today! I did not feel confident headed into my 3rd infusion, but everything went just fine! One foot in front of the other, one step at a time!
I really hate these few days post chemo. Everything tastes horrible, I’ve got the bone tingles from the neulesta, and am restless...my head is dizzy and my vision is blurry. I don’t do much, which makes my days go by at a snails pace. I did get up, make a frozen waffle, shower, and washed bedding and my blankies. Now I’m binge watching This Is Us... I just have to keep reminding myself that the better days are coming!
Many positive thoughts to all you ladies!!!! I hope everything is going well.
0 -
Thanks mtspacekace. It’s been awful. The nurse who did it last time isn’t here, and I have a new nurse who has only been in onco for four months. She started the precooling on the DigniCap early before the premeds then tried to Fix if by adding more time, then screwed up the machine. I was sobbing in the chair, asking her to get someone else, then I had two nurses race in, a nurse mgr and the DigniCap rep over FaceTime trying to fix it. Then we had to start over. Pause the taxotere. Couldn’t get the cap back on. There’s no way I’m keeping my hair after this fiasco today. I’m heartbroken. I lost hardly any after the first infusion. And my MO just had one patient finish her treatments with DigniCap and kept it all. And it hardly sparks confidence in the treatments itself too.
0 -
KMom57, so very sorry to read that you are having a difficult day. I wish I could do something for you. Hopefully, the cap was in place long enough to still keep your hair.
0 -
Thanks Shar. I know she was doing her best. She just messed up.Only 20 minutes to go then I can go home. And I’ll be halfway done with chemo. I’ll focus on that. I just am at that point where it feels like this treatment road that started last October is never ending. Trying not to feel sorry for myself. At least my labs were good. White count was up at the top of the range, 9.2, so no Neulasta this round. That’s a good thing.
0 -
The final analysis, the day was horrible horrible horrible. The nurse, as it turns out, has less experience with cancer than I do (in onco since March), and worse, seemed unwilling to ask for help. Among other things, she told me I was getting Taxol. She couldn't get the cap on right and blamed it on my “small head" which made my sister laugh as the bigger than normal heads in our family are a family joke. She tried to add time to the pre cool because she started it 15 minutes before premeds so of course it finished early, and in the process of fixing it she appeared to have rebooted the machine and couldn't get it back on. Then invalidated my card. Had to turn it off, remove the cap, start the whole thing over with their card and the DigniCap rep giving instructions over FaceTime and saying in a worried voice, “you need to hurry." A low coolant problem. Said the machine was telling her as she added the coolant that she didn't do it fast enough. And she didn't ask for help. I didn't know she had not resolved that. Later she Told the rep the coolant cap kept popping off which she had failed to go ASK anyone what that meant.
Thirty extra minutes of precool and then unpaused taxotere due to the restart which pushed the day out to 5pm. Tried to tell me post cool was 90 minutes while I insisted it was 120, which the DigniCap rep confirmed was correct. It is 120. The nurse mgr got involved, helpfully told me that “you know DigniCap doesn't work 100 percent," in other words, “if you lose your hair it's not our fault," despite the fact the MO had just told me if I had only minimal shedding in round one, which I did, I wouldn't lose much over the remaining rounds.
Then to top it all off, no pun intended, I found out to my surprise after finally pressing the call button because the alarm had been going off for ten full minutes (I timed it), indicating I was done, that she had LEFT. Like FOR THE DAY. Left me sitting there attached to the machine knowing I only had five minutes left on the timer when she came in to remove my IV, without telling me she was leaving or who, if anyone, would be there to help. A very nice male nurse came in and said “well, I think I just disconnect you." I don't know what else to say. Except it's highly highly unlikely, I think, that I will have any hair left for round three. Which sucks so bad because it really really worked for me, which the MO confirmed. I'm both angry as hell, and devastated.
0
