Starting Chemo May 2019
Comments
-
MM -- I had a little tintinnus, and it resolved and went away. I thought it might be some form of neuropathy of those nerves?
0 -
upstate... congrats on being done with rads. What happens now?
MM hope that tinnitus eases up.
I had some mild tingling in my R foot 3 weeks ago. It is transient, mild discomfort. It doesn’t interfere with my life. I notice it maybe 2 times a day. I did not ice.
I have my surgeon appointment today. I heard thru the hospital grapevine that she is retiring soon so I’d like to get you the bottom of that. I’m also hoping that she’s fine with the surgery date I want. I have a vacation at the end of October. I’ll cancel it if she feels it’s best but I’m hoping the extra week won’t make much of a difference.
My brain fog is lifting a little. I felt pretty sharp yesterday. But still needed a nap and had to really push myself to get my easy workout in. Felt better when it was done.
Hope everyone is feeling well and having a nice day
0 -
hi everyone!
UpStateNYer, congratulations on finishing rads! Yay! The active treatment is over! How do you feel, how is your skin holding up?
Jrominger, sorry to hear that Nat has neuropathy. Prayer goes up that it will be short-lived and not too bothersome. You mentioned that, perhaps, she iced too much. I think you are right there might be a link. In my case, during my 10th treatment, I put on thin latex gloves instead of my usual cotton ones. My fingers were hurting for real and tingling developed soon after.
April, good luck with your appointment today and keep us posted
Mightlybird, the finish line is in sight!
Sending healing thoughts from across the pond:)
0 -
Tomorrow I will be 4 weeks PFC. Hard to believe. I still don't have all my taste back and that's getting old. I haven't been able to eat anything but egg noodles and butter for a long time. I can now force myself to down some veggies, so it's a little better. Everyone else I've read about has it back by now; don't listen to me as a typical example.
Thinking of you guys that are close to the finish line. It's so exciting! Please let us know what steps you will take next. I love following everyone's stories. I am scheduled for oncoplastic lumpectomies on Oct. 10. Will recover from that and move on to radiation. I hope I'm finished with all of it by the end of 2019 and I can start 2020 with all this behind me.
0 -
MountainMia, santabarbarian, I just wanted to say ‘THANK YOU’ for staying in touch, and for offering your advice, support and encouragement, exactly when we need it!
You are two amazing ladies
. 0 -
so.... good appointment, no need to cance my vacation, we can surgery first week of November, when I get back.
BUT... apparently I need to go back to the cardiologist and have more testing before they sign off on me. I am really annoyed by this bc I have been doing exactly what I’m supposed to, and asked cardiologist directly, do I need to see you again before my next surgery. He said No, he would see me in December (6months). AND in the letter he sent my BS he wrote I needed to have additional testing. I literally was in his office and he said everything looks fine see you in 6 months. Oh well... I’ll set that up and get it done. (I went into a-fib after my first surgery).
And the second bummer... I mentioned radiation and how MO said I wouldn’t need it. BS said that’s not his call, I need to meet with a RO after mastectomy to determine that. It wasn’t his call to make. I knew that in my heart, but liked his answer so I didn’t want to question I’ve come this far, I’ll keep on going. Whatever is recommended I’ll do.
So there’s my update. It seriously feels like there’s no end in sight.
0 -
Hello everyone,
April0315- I know that it seems like these appointments are never ending.It is probably good for you to see the cardiologist even if it just as a precaution. I had sort of a similar experience as you. I was told I had an irregular heartbeat and needed to see a cardiologist prior to first lumpectomy. I never before was told about any heart issues, but at least got it checked before my surgery and the further testing proved I was ok. Also, MO told me I may not need rads, but surgeon made me an appt. to see RO ,and I ended up needing rads due to unclear margins even though I had IORT during first surgery. I am wondering why you would need rads with clear nodes and mx planned. Let us know what you are told. My skin is holding up well after rads. I am an taking AI, anastrozole( arimidex) now and so far no se's. Will you need to take them as well? Hope you have a nice vacation.
Lacombattant- when do you start rads? Are you taking an AI as well?
Jrom-Sorry to hear about Nat's neuropathy. Hoping it goes away. So good that you keep up with the exercise.
Mightlybird01- Sending positive thoughts your way. I really appreciate you keeping us informed during your journey. You and Nat are nearing that finish line.
BAMR- hoping your taste comes back. Best of luck on the upcoming surgery and rads. Yes, would be so nice to have everything completed by year's end.
Palmetto- Hope you have a nice vacation.
Mountainmia and Santabarbarian- Always good that you are checking in, and it always uplifting to read your informative posts. Much of your advice has been helpful to me, and I just want to say Thank- You 💞
Mountainmia- my hair is growing in slowly as well, but I am just happy it is growing. Hoping your MO appt. went well.
It felt weird to not have to go to rad appt. today. I will see RO for follow up on November 8th. Then, MRI and mammogram next March, then SO followup in April. No MO followup until next September.
Hi to Happyanyway, and to everyone else. You are all always in my thoughts and prayers.
Pat💕
0 -
Upstate.... I can't imagine what I'd need rads for either, but I will see the RO and see what they think.
I got in to see the cardiologist tomorrow. I don't mind following up, I don't mind being cautious. I mind that he didn't bother to read my test results and told me inaccurate information. It's a patient safety issue and I will follow up on this. Both with proper testing and changing cardiologists when this is done. Unless he has some wonderful bedside manner tomorrow and admits he messed up. We all make mistakes, no one is perfect.
I start AI's (letrazole) after my bone density scan, which is still going thru insurance approval process.
Still frustrated but it's easing up...
0 -
Lacombattante, thank you for your prayers. Yes, we sure hope it is short lived as well. Her toes really hurt and she is tough. You are most likely correct. We didn't have any neuropathy until 10 days ago so we iced without light gloves or socks. It was too much. This last one we will go back to the gloves and socks. Just keep them cool and not frozen!! We don't want it to interfere with hiking or biking
Did your neuropathy go away?I agree with Lacombattante, thank you MtnMia and Santabarbarian for staying with us. Your insight is invaluable plus for those with TNBC it is good to hear your ideas and thoughts.
Hang tough everyone .
J
0 -
April, sometimes they need to take a look at the pathology after Lx-- in some cases this changes the rads recommendations.
I was really NOT excited about rads but with me, with TNBC they let me choose between Lx + rads, and Mx. I did not want Mx so I had 28 whole breast and it was pretty easy until the very end (last 5-6 sessions) when I did have skin issues (I have super sensitive skin, so that's not too surprising.) I was a little bit naive, and planned to hit the ground running the week after rads was done and instead I hit the bed sleeping for a solid week.
3 rads tips. (1) there is a med called pentoxifylline which helps to prevent fibrosis which is a possible SE of rads. It's not widely given. But I asked my RO, "is there something that can help this inflamed feeling? I feel like my tissue is very enflamed" and he prescribed it. Whats weird is you take it for 6 months minimum so I am still on it. (2) If you happen to get skin problems, Hyperbaric Oxygen is the best for healing.... In 3 sessions of HBOC over 10 days, my skin was virtually totally healed. You lie in a chamber and breathe oxygen under pressure so it's forced into your cells (nice when you have anemia!). (3) Proton rads has appreciably less "wash" so fewer SEs. Recently shown to be just as effective. With a L sided or high grade cancer it can get coverage, so it does not hurt to check into this if it interests anyone. Not widely available... 22 centers in USA currently.
La Combattante, and April, and Jay, thanks for the words of appreciation-- it's a pleasure offering support to such an awesome group! Since there are a few TNBC people here, I decided to stick around! I am pulling for everyone, and so excited to cheer for the finishers!!
0 -
SantaB... I've already had 4 Lx and am heading into a bilateral mastectomy. Nodes negative. So it seems reasonable that I would not need rads but nothing about my journey has been normal or predictable. I'm sure we all feel that way. Thanks for the tips on the rads in the event that's what happens.
0 -
Mightlybird01, I think pet treats for your nurse's pets are a good idea!
Hi palmetto! Thank you. I have chemo brain, too. I'm having a hard time catching up with my May buddies.
Fingers crossed for a clean MRI! Brittandherboobs, I'm not going anywhere. I may be finished with chemo, but you all will always be my go to group. I'll visit the surgery and radiation threads when the time comes, but I will continue to call this thread my home.
Hey UpstateNYer and LaCombattante! I'm still pretty tired, but otherwise fine. How about both of you?
Oh April0315, I gained more weight than you. Sucks. You and I both have PS appointments on the 8th. I visited a cardiologist yesterday. My resting hr is high. I had an ekg. I have a monitor on now and can take it off tomorrow. I have an echocardiogram scheduled for next week. I feel you on rads, too. Hang in there.
MountainMia, sounds like you had a great time! I'm huffing and puffing just thinking about it.
Seriously, though, thank you for the encouragement. Makes me feel good. I still have tinnitus, too. My ENT assured me that I will adjust eventually. Fun SE. Hope your appointment goes well tomorrow! Oh Jrominger, you're right, thank God for Nat's counts! Praying that the neuropathy subsides soon.
BAMR, please keep us posted on your surgery. I will be thinking of you! I hope you are finished this year, too. That would be amazing.
Hi santabarbarian! How's it going?
I agree that there is no right or wrong decision regarding surgery, reconstruction or not.
Been busy here helping my husband and our 16 yo prepare for France! LaCombattante, I wasn't able to get my daughter to create a list of questions for you. Thank you for offering to help.
I see my MO tomorrow. I'll keep you posted.
I think of everyone, even those that don't post often. I hope you are well!
Best to all.
0 -
HappyAnyway, sorry to hear about your resting heart rate being high. I am sure part of this is our body's working overtime getting rid of the poisons. Since I have my fitbit which records my heart rate as long as I wear it, I am amazed just how sensitive this can be. For example, when I had my mouth sore and was in real pain, my resting heart rate was up 2 beats per minute. Something like this you would never notice without a device like that. Did you also have a heart echo prior to chemo? That's when I had mine. I don't know if they will do one post chemo, but since I don't think I have a problem, maybe they wont.
My surgery date is set now too. Nov 8th. I am so relieved that I made all my decisions, and now I hope I won't question them anymore. UMX, no reconstruction, very likely according to my surgeon no rads needed. I hope this is how it will be. I will be going in for anesthesia pre-op and nurse teaching on Oct 29th and then for the procedure Nov 8th. Good thing is that she will remove my port at the time of MX, so at least I don't have to get that done in a separate procedure. Then all I need is a quick recovery after MX and hopefully being back out with my horses before years end!
0 -
Mightlybird. Wow we are definitely on the same path. We got all of our dates set. All the preop planning on the 29th, EKG, then an echo, pain management, and PT study for post op. Then back on the 4th for clip placement and nuclear dye for sentinel node and surgery on the 5th. They asked us to stay the night and in the area the next day. 10-14 days later drains will come out. 2 at time. They also don’t think radiation will be necessary but they will make that determination after the pathology. Natalie will also have her port removed at the time of surgery. So very similar, including times!! Praying that all will go well!!
There is an amazing women who is a PHD BC tumor researcher. In her 30’s she got TNBC almost identical stage as ours. She did AC and T, no rads and has been NED for 7 yrs!! She is interesting to follow and speak with!
Happyanyway good to hear from you. So glad chemo is done for you. The France trip for your daughter sounds fabulous. Praying for your heart rate. I believe all that will correct itself the further away from chemo you get.
I loved hearing everybody’s updates! Praying that everyone’s recovery, surgeries and rads go better than anticipated and any SE’s would be minimal and GONE!!
Hang tough!
J
0 -
Hi everyone! Great to see the progress, the next steps and dates set!
An update form my side: I had my 1st post-chemo blood test, Zometa infusion and a visit with MO. My counts are good (WBC 4.7, RBC 3.46, HgB 11.9), they added CRP to the mix and the level is low, 0.7 mg/l. Zometa was uneventful, but now I am bracing myself for SEs. MO warned me that the 1st infusion can cause flu like symptoms and bone pain.
I will start my rads on the week of Oct. 14. MO is adamant that she wants her patients to have at least three weeks between taxol and rads. RO was in favor of starting ASAP, but agreed that Oct 14 would be a good compromise.
I'll be starting Aromasin at the end of October, I am not sure I followed MO reasoning for not starting it together with rads, she sited combination of SEs ... but I will have 25 sessions and SEs from rads will only worsen with time, no? Lol.
To all who gained weight on chemo - I hear you, sisters! I gained 5 pounds during taxol which I absolutely don't need. If anything, with hormone receptor positive cancer, I better be lean and mean. Upcoming rads will be a challenge of course but I will try to stay as physically active as I can.
Sending healing thoughts and prayers, please be well!
0 -
Thank you, Mightlybird01. Yes, I had an echocardiogram prior to starting chemo. I agree that it is related to chemo. My cardiologist is leaning towards the same. I'll probably need a beta blocker, likely Metoprolol. She'll review my EKG, upcoming echocardiogram and let me know for certain. I just want it under control prior to surgery. I'm glad that your surgery is on the books. Can't wait until mine is!
Jrominger, I believe you're right. I think my hr will correct itself. Hopefully sooner than later. I'm excited for Nat and you!
MountainMia, how did your appointment go?
Hello to all! Have a great day.
0 -
so HAPPY to read everyone making it the Chemo Finishline... I am done with Chemo now, last THP was 9/18. I have switched to #3 Cancer Center to finish my journey. Being TPBC (triple positive), I still have a year of infusions ... my nightmare journey of incompetent Oncologist I wish on no one, and partly my own fault for not doing my research first ... I am on a few Facebook groups and chime in a newly diagnosed ladies to let everyone know, yes it's scary and alot to try and comprehend, but Breathe and come to breastcancer.org and Read and learn first .. which is ironic, all my life I preach Knowledge is Power, but there I was 6 months ago, going to a appoints feeling scared and stupid, I guess I was to afraid to look. Once I did start looking, my eyes and brain opened up, hence oncologist #2, and then just wanted to get through the darn chemo knowing more and more and now finally in a Breast Care Program with a Breast Doctor, what a relief... He said "Sorry about your terrible journey, no one should feel bad through there Cancer Journey, no let's finish this"... yeah, that's music to my ears!! I still have a Oncoplastic Surgery (lumpectomy #3 with Reduction/lift same time) and a year of Target/Immunology treatments for a year ... Just ready to be done being sick and tired all the time, along with my sevre neuropathy to go away. I am going to have a few high dose Vutamin C infusion in Hope's to help my insides heal from the Chemo.
As I say, Always an Adventure, this one just had too many potholes for my liking...
THANK YOU all for keeping up on the board, I have read every post all along. I chose not to write as I was in a dark place trying to make it day to day and many days YOU ALL brought me out, so I deeply thank you...
I am looking forward to being out west next year for our Grand Cayon reunion 😊
0 -
It was so good to hear from you, Kim. Thanks for the update. It's been a bumpy ride for many of us as well. You have had more than your share, however. Glad to see that you have found a doctor you can trust and who seems to be on the same page as you. It will get better. It did for me. Please keep in touch. Pat👍
0 -
wow we are all just cruising along to new adventures.
Saw my cardiologist, got my clearance letter. No further testing from him till 6 months from now. No meds, thinks my a-fib was an isolated event. I sure hope so.
Looks like a bunch of us will have surgery around the same time. BS and PS are working out dates, Nov 6,7th or 8th.
I’m feeling more optimistic than I was yesterday. Phew!
And I have to say, I felt a little bad ass walking into the cardiologist in my scrubs from work with my bald head
Anyway.. back to work!
0 -
April, you make me smile.
Feeling a little badass is just right. And I loved how you put it, walking in "with my bald head." I got used to thinking of "me and my bald head." Now that I'm not bald anymore, it's weird (and don't tell anyone!) to admit I almost miss it. I had my 3 month followup appt with MO this morning. Before I went to that clinic, I went to the infusion clinic to deliver a bag of goodies. I took them 24 individual packets of nuts (peanuts, almonds, and cashews from Costco,) 12 chocolate bars, and a 1 lb. bag of Smarties, and a 1 lb. bag of Tootsie Rolls. Hopefully all the infusion nurses and staff and volunteers will get to have at least a treat or two from it. It's a big clinic, 40 chairs available for patients, so lots of staff.
Then I went to see the doctor. I've quite grown to like him over the last several months. But we agreed it's over between us.
I'm fine. I won't go back unless there is a need. I'll deal with my monitoring through my BS and PCP. The rest of the day was crazy, and crazy busy. I need some good sleep and a couple of days off.
0 -
This evening was my annual neighborhood pot luck. There were about 20 of us together, only for a couple of hours. It was pleasant enough weather but a little cool. I think everyone had plenty to eat and enjoyed seeing each other.
I'd been looking forward to it. The first of these we attended was 17 years ago, held coincidentally on the day we moved into our house. It was fantastic timing, because of course we didn't have any dinner ready for us! We haven't made it every year, but we have most times. And even though we don't know most of our neighbors very well, it is things like this that help bind us.
But I am glad it's over. It was tiring. For one thing, maybe THE one thing, I'm tired of being on display. I'm tired of people looking at me sympathetically, asking probingly, "How ARE you?" Well, I'm fine, thanks. Can we talk about something else? Maybe once I've seen ALL the people I know, and/or once my hair has grown out, I'll stop feeling so conspicuous and people will stop treating me like an oddity. (Yes, they are being very kind. I know that and appreciate that. I love them dearly. We are connected. But it's still tiring and sometimes tiresome.)
And YET, my birthday is later this month and we're having a party, so I'll do it again in a couple of weeks.
0 -
Mtnmia. Natalie couldn’t agree more. She is very private and there is no way to hide the cancer look. So we try and get the cancer chat done quickly and thendo our utmost to talk about anything else when we go out. Natalie says once this is in the rear view mirror she will not bring it up at all unless it is necessary to help someone else!! Love your posts!! Thanks.
Last Taxol tomorrow!!!!!!!
Blessings,
Jay
0 -
Go Nat!! Hooray for the last one. Bless you both. It's a hard road, and hard to be graceful all the time.
0 -
Good luck today Nat!!! I can't believe we have reached this day. I remember, when I put the date in for Taxol 12 in my calendar, I thought that this will take ages to reach. But here we are! It will be all well!
0 -
Finish line crossers, you are in my thoughts today!! Cheering for you!!
0 -
Jrominger, best of luck to Nat! She will cross this finish line with flying colors
0 -
YAY!!!
0 -
MountainMia. I feel you are a kindred spirit. I completely hear you on getting so tired of talking about my BC. In fact, I have a long weekend coming up, I could go back to WA where my family is, so see everyone I haven't seen in a year, but i sort of don't want to. I haven't seen any of these family members, bald, with a port, post chemo, another surgery still to come.. I just don't want to spend all week talking about it. I'm leaning more towards taking my daughter to Chicago, just to be anonymous, have a nice time, without explaining everything over and over. We shall see how I feel come Saturday.
Last week I got to go to a friends birthday lunch, I loved not being the center of attention, in a few weeks I can attend another co-workers going away party. Another opportunity to celebrate someone else.
I'll be so grateful to have my energy and hair back so I can just move on quietly.
(I swear I wrote this a few days ago and it didn't upload)
0 -
YAY!!! Finish line for Nat and mightlybird this week!!! You both are in my thoughts today.
I go in for an MRI this afternoon. Hopefully, they can confirm what my MO and I feel-- that the tumor has dissolved completely. That would be wonderful news that would be celebrated along with the end of chemo on my girls trip! I leave for Cozumel and Costa Maya on a cruise tomorrow! It will be so nice not to think about treatment, appointments, surgery, etc for a few days.
0 -
Palmetto- good luck with the MRI, let us know how it goes. Your trip sounds heavenly, you should have a great time
Nat & Mightlybird01- Congrats on finishing up this week. I am so happy for you both. Hoping that the next step goes smoothly.
April-Enjoy your trip, whichever you choose. I had family from out of state visit, and all they did was talk about my condition. It was not pleasant, so I understand how you feel about not wanting to visiting family. It takes time, but you will have more energy back ( and hair) in no time.
Lacombattant- have you started radiation yet?
Hi to Happyanyway, Mountainmia, and Santabarbarian.
Love and prayers to all. 💞
0
