Starting Chemo May 2019
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had my PS appointment. Nothing unexpected, I used him for tissue rearranging and closure after my 4 lumpectomies. Hoping for nipple sparing mastectomy, won’t know for sure if that’s possible till they get in there and use their fancy SPY camera to check for blood flow.
Bone density scan scheduled for Friday.
Palmetto have a great time on the cruise!!! What a nice treat! Hoping for good news from the MRI
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Palmetto not being able to feel the tumor is fantastic. I bet the MRI will confirm everything. Have a spectacular trip.
April, man can we relate with the constant cancer chatter. Whatever you decide on the trip, have a blast.
Thank you everyone for your prayers and thoughts. We finished Taxol today!!! Mightlybird you are next!!!! Nat quietly rang the bell but the whole center sang to her!! Hard to believe this part is over. Our PA is hard to read. She said some confusing stuff but my takeaway was “ nothing palpable and the pathology after DMX will tell us everything “ No rads discussion until after pathology! Blood work was just ok WBC’s 2.9 ANC 1.5. Hemoglobin 11.1.
DMX scheduled for 11/5. Then figure it out from there. We did a fun
hike yesterday and we will do one tomorrow, that we said 3 months ago “let’s pray we can do this after #12” So that will be coolLet’s all grow some blood cells and eye brows😜
God bless everyone!!!!
Jay
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Jrominger, Nat, CONGRATULATIONS to both of you on achieving this milestone! You navigated this path with amazing resilience and grace.
Jrominger, I think that PA had to say this about the final pathology but the fact that nothing is palpable is so very reassuring.
Mightlybird, we all are waiting for you to join us past the finish line, go girl:)!
Palmetto, how are the MRI findings?
April, I assume the bone density scan is in preparation for hormone therapy? Keep us posted!
UpStateNYer, my starting date for rads is not confirmed yet and I am getting seriously annoyed with the way this part of my treatment has been managed so far. My MO has been very clear that there must be a 3 to 4 weeks break between the last taxol and rads, due to toxicity. When I saw my RO last week, I mentioned this and while she was in favor of starting sooner, she seemed to be OK to start on w/c Oct 14. This morning the center called me and said that ‘RO feels that I should start ASAP’ and 'we would like to confirm your 1st treatment tomorrow'. Me: 'uhm, no, unless we have MO clearance. Could you please contact Dr ... and confirm with her that this is OK?' Just to be clear, they are all in the same hospital, just few floors apart. Got a cal an hour later, they are 'still working on it, but likely no rads tomorrow'. Me: 'ok, good, when do we start then? Next week, I assume?' They: 'we don't know yet, we will confirm later'. That was the moment when I totally blew a gasket.
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What a great picture! Glad you guys got out for a nice hike and will do the celebratory one soon. I am in the same boat with rads, wait and see. So happy for you both to have this portion of the journey behind you.
We've decided on Chicago. Now I get to find the hotel etc... but I'm looking forward to the trip. I've only been there twice and they were very quick trips. If anyone has any experience feel free to share!
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LaComb... yes, the scan is for the AI (baseline). I plan to start the 15th, MO said I could wait 3 weeks PFC. I just wanted some time to let me body bounce back a bit. So sorry you got the run around about the rads appointment. I find I frequently have to remind myself that the schedulers aren't generally medically trained and I try to give them a break. I had a much less important discussion with the scheduler for the DeXA. It was marked by the MO as an ASAP scan, so she said I need to come in either yesterday or today. I told her I was working and couldn't come till Friday morning. She was very adamant that I get in earlier. When I stood firm she said she'd need to mark that on my chart that I was refusing to come in ASAP. I explained that the order was placed on the 24th and if we've waited this long I didn't think a few more days would change anything. Again she started scolding me. I just took a deep breath and asked what time can I be there Friday and thanked her for doing her job and being so thorough.
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Yeah Nat and Jay! Love the picture! Good for you guys ringing the bell..
April, Chicago is wonderful this time of year! We live 40 miles east of Chicago, so know the city well. The sky is blue, the lake is blue, the air is wonderful crisp in the morning, I love Chicago. If you need ideas what to do pm me (Nutella cafe comes to mind :-)!)
Palmetto good luck with your MRI. It is not the most pleasurable of all experiences but you'll make it!
I am off in a few hours. I feel great and if I feel like this next Wednesday, I will be super happy. Hubby and I are planning trips too, one to the Kentucky horse park and one to see wild mustangs in North Dakota (latter one will be a bit late (winter may have come), but this is what I had planned to do this summer before cancer decided differently). You can see, I am a horsey-girl, and searching for wild mustangs in all states they are in is one of my passions. The Theodore Roosevelt National Park is where they live in ND.
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jrom and Nat, fantastic picture of joy and relief. Great for you both.
LaCombattante, UGH on the scheduling issues. That's one thing my hospital has done pretty well, coordinating appointments. We don't need uncertainty in things like that, it just adds to the stress.
April, first class response on your DEXA scheduling "emergency." Very good way to keep your temper.
As to Chicago, the big question is what kinds of things do you like to do? How many days will you be there? We get in from time to time (not often enough, IMO!) and I'm no expert but might be able to point out some things we've enjoyed. You can private message me if you want.
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Mightly and MtnMia.. I will message you both later today. We will be there Sat-Tues, flying in to Midway (my hubby flys for Southwest). Looks like the hotel cost is the biggest shock. Just touristy stuff wtih my 18 yo daughter, Her friend goes to Loyola so she'll need to get a visit in with her. I would prefer to not rent a car and just use Uber/Lyft. She likes gardens, museums and stuff like that.
Off to work.. It's nice to have some brain function back, and co-workers have said my coloring looks better, that I was very pale during chemo. I appreciate them not telling me that while I was pale
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Yes "Final pathology" is when the fat lady sings... I was told the same thing. (They would hate to tell you "the cancer is all dead" and then be proved wrong in surgery with some tiny cluster of live cells.)
Wishing you all the best -- and hoping for that confirming path report to end the suspense!
Nat & Jay you look so happy!! Beautiful!! It is a joy to ring that bell.
Re scheduling rads, I had surgery in between chemo and rads. My rads began abut 9 weeks after chemo. I agree its a PITA that the just chemo'd patient has to coordinate this kind of scheduling stuff. The moment when you are least feeling like being your own advocate, and yet you still have to be...
A reminder to TNBC folk and left sided residual tumor folk... you may qualify for proton rads. Worth asking, especially if there is a proton center in your vicinity.
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PS re chicago the boat tour of the city's architecture is really cool...
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DONE!!
No bell, but lots of hugging from the nurses, who absolutely loved the dog and cat treats (I also added a few human treats!).
I am relieved and tired and ready for my last week of side effects.
Whoever is still in treatment, you'll soon be there, it will be faster than you think!
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Congrats Jrom and Nat. I am thrilled to see Nat is finally finished with chemo. Loved the picture too. You both look so happy, ad you should be of course. Also am so very impressed at how active you both are with your long hikes.
Mightlybird01- How did it go today? Looking forward to seeing your pic of ringing that bell. Hope you will enjoy your trips as well, they sound fascinating.
Lacombattant- I sure do hope you get to do rads soon. Wonder why those doctors are not in better contact. I had surgery in between chemo and rads. My rads started within a month of surgery. Hoping the next phone call you get is to confirm rads dates. I had 2 appts. for simulation and set up before actual rads were started. Best of luck to you.
April- have fun in Chicago. Hope you and your daughter have a great time there. Good luck with your dexascan. Let us know what AI you will take. I have been on anastrozole since Sept. 5th. Took it while doing rads. So far, so good.
Mountainmia- How are you feeling post rads? I am feeling really very good. I have a lot more energy than I thought I would. I cleaned my entire house today, moved furniture around, did a large load of laundry, stained parts of my deck , and did a workout with weights. I even made a pie and cooked a big dinner. Will be taking a long walk this evening. I just hope my energy levels will last and I don't feel the effects of today tomorrow. Be strong everyone.
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Mightlybird01- Congrats on being finished. Glad to hear that your pet and human treats were a big hit. Hoping minimal se's for you too. 👍
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YAY mightybird! You made it to the other side, which is mighty indeed!
UpstateNYer, great to hear you're feeling so well and energetic post rads. I'm doing well, too. I'm doing about all the things I used to. I started back to the gym on Saturday so have increased my physical activity some. I'm a pretty big wimp on the weights, though, only lifting half as much as I used to. It will take a while. I do think I'm generally just much more tired than before cancer, though I'm not sleeping any more. And my ambition for how much I get done in any given day is lower, so I take care of what I must, and some more, and leave the rest for another day.
April, yes, the boat tour of Chicago architecture would be fun. I haven't ever done that! but the buildings are spectacular. I almost always get to the Art Institute. Last year I was fortunate to get to the National Museum of Mexican Art. It's fairly small and very interesting.
http://nationalmuseumofmexicanart.org/
We happened on the Chicago Cultural Center one day. You might find it interesting.
https://www.chicago.gov/city/en/depts/dca/supp_info/chicago_culturalcenter.html
There's always Millenium Park and "the bean."
https://millenniumparkfoundation.org/art-architecture/cloud-gate/
If you do actually have an interest in architecture, you can double up that with shopping! The old Marshall Fields building is now a Macy's. It's really beautiful inside, especially as you get to the upper levels. We by chance ran into the building manager one day in December a few years ago, and she was able to tell us more about it.
https://www.visitmacysusa.com/article/fascinating-history-macys-state-street-chicago
And don't forget the food. Any kind of food you want. We enjoy going to Greek town, but there's everything you could imagine, really.
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Mightlybird Mightlybird Mightlybird!!!!!!! Ya baby DONE. Love it. CONGRATULATIONS!! Onwards and upwards!
UpstateNYer thank you for kind comments and prayers. Wow look at all you did today. Your a beast!! Love it. Mmmm what kind of pie. I only like 2 kinds.....hot and cold 😜
Lacombattante I’m happy to fly over and put a little muscle on them to get them moving if needs be 😜
April. We cooked dinner for my mother tonight and we talked about your trip to Chicago. We are jealous. It’s on our bucket list. My mom and dad spent some time there way back in the day. They both got degrees from U OF I. Keep us informed!
Mtnmia thanks for all the resources on Chicago!! I’m glad you are gradually making a comeback One step at a time!! You will be your old self before you know it!
Happyanyway how the heck are you doing??
We did do that hike that I prayed we would be able to do after #12. So very blessed. Our crazy/awesome barrel racing airiel arts granddaughter is coming for the weekend!!!! So ex Nat’s neuropathy feels better today. Answered prayer. They did drop her last Taxol by 20% due to neuropathy.
Sure thinking and praying for EVERYONE on this thread!!!
Hang tough and blessings to all.
Jay
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Santabarbarian thank you about “ the fat lady singing “. I know the pathology will be the proof we are looking for!! PA just didn’t say things right. But nothing palpable is a good thing!! Looking for that cPR like you!!
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Congrats Mightlybird!!! What a relief huh?
Thanks MM for all the great links and ideas. I worked yesterday and will work today so I will probably not have much time to plan till Friday. I think if I can just book a hotel today, the rest will fall into place. I'm looking forward to it. The boat arch. tour sounds wonderful.
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I just caught up on our thread. Wow! What an amazing group, so hard to believe we have finished or are super close. I am 2 months out from chemo. Had my DMX 3 weeks ago today. During surgery we had a false negative on my lymph nodes and had 2/3 positive. Last Monday I was back under for an axillary node dissection and 3 more nodes were found. Yikes! I will need to do another PET scan next week or after I can get my last drain out. Fingers crossed that it is all out. Met with MO yesterday and getting set up for rads after plastics can get me expanded. Most likely will be on lupron shots and Anastrozole. She also wants me to join a trial. I would love to give back.
Love to all❤️❤️
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April, you can also check out AirB&B:
https://www.airbnb.com/a/Chicago--Illinois--United...
I had friends who stayed on the 70th floor right by the lake for like 100.- a night. They loved it.
MountainMia provided a great list, and yes the boat tour is wonderful, as Santabarabr said.
I can add only a few more links.
The Hancock tour has a new deck with a very scary window tilt out from the 91st floor. Maybe after chemo you are fearless enough to try it!
Everyone I took to the Hemingway birth place really liked it.
https://www.hemingwaybirthplace.com/
It is a sweet little museum in Oak Park (take the green line). You can also visit the Franck Lloyd Wright museum and houses there.
The Art museum is huge, when my parents come and visit, they take 2 days to get through it. You off course also can just go for a few hours, to a few things that are of interest to you. But for shorter museum visits I prefer the Museum of modern Art.
If you go to Loyola, there is India town right there. It is not very beautiful to visit, but you get a real impression of India and Pakistan, and a ton of real authentic Indian and Pakistani food. And while you are up there, you could drop into Andersonville just south, for mostly Swedish, but also some German heritage.
http://www.andersonville.org/the-neighborhood/hist...
For the evening, some blues may be fun..
http://www.bluechicago.com/default.aspx
You most definitely don't need a car. I would recommend to get a Ventra card and just ride around on the L or the busses.
https://www.ventrachicago.com/howitworks/
Or, as I just found out, you can even get the Ventra app and make it even easier to pay for public transport. Or, as you said, Uber. But from Midway you can easily get into downtown on the orange line. It all depends on how used you are to using public transport.
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thank you Mightlybird! I’m very comfortable taking public transportation so thanks for the tips on the Ventra App. It will be a very busy 3 days
my surgery is scheduled! November 15!! So relieved to have a date
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Mightlybird, CONGRATULATIONS!
G1973, I am so sorry to hear about affected lymph nodes. ER positive tumors rarely achieve PcR, and some residual disease is often found after surgery. I had a visit with my BS this week and discussed this very concern. He reminded me that for the same token, HR + tumors are usually slow growing. Radiation will take care of local residuals after left after surgery and chemo, which, sadly, cannot be excluded. And AIs are our best friends. I pray for the clean scan for you, please keep us posted.
Jrominger, how is Nat today? Thank you for offering to put a little muscle :. They must have gotten the vibe somehow- my appointment is confirmed for Monday afternoon.
UpStateNYer, that's a LOT of activity! Great that you are feeling and acting like your old self already, helps me to remain hopeful.
April, enjoy Chicago! I was there ages ago, for a weekend and absolutely loved it.
Keeping you all in my thoughts and prayers
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Lacombattante. Thank you for asking! Natalie is doing very well. We still can’t believe chemo is over! She has neuropathy in her toes. Her naturopath put her on alpha lipoic acid and some special cream. So hopefully that will help!! Our granddaughter is staying with us this weekend so that is medicine for the soul!
G1973. Lacombattante’s info is spot on and we’ll be praying for great results with the rads and scans.
Blessings
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What a great bell picture, Jay! Congrats to Nat and MightyBird! Enjoy the next few weeks away from dr visits. I hope all your side effects disappear.
Had my surgery Thursday and it wasn't too bad. They said I should expect to start rads in 4-6 weeks. Just keep marching forward...
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Hello everyone!
It's been busy here. I'm going to do my best to catch up.
Kimmh012, good to hear that you found a different MO. I hope the rest of your treatments and surgery go well. Please let us know when it's scheduled.
Palmetto, I hope you had (or are having) a fabulous time on the cruise. Praying for a good MRI report.
April0315, I recommend the Museum of Science and Industry. I'm glad that you have a surgery date!
Hooray Nat! Love the photo, Jrominger. You two are beaming with joy. Awesome! I'm sure you enjoyed making memories with your granddaughter, sweet.
LaCombattante, sorry about the confusion regarding rads. Why didn't the RO confer with the MO prior to calling you (rhetorical)? I get frustrated in circumstances like that, too.
Mightlybird01, woo-hoo! Congratulations on finishing chemo! I'm sure they did like the treats, what a cool idea.
G1973, I'm sorry about your nodes. Praying for a clear PET scan.
UpstateNYer and MountainMia, sounds like you're both doing well! Nice to know that you're able to do more physical activity. I'll probably pick your brains later regarding rads.
BAMR, I hope you have a smooth and speedy recovery.
Hi santabarbarian.
Count me in with those who have no palpable lump. Praying for a complete response for all.
I visited my BS today. Nipple and skin sparing, bilateral mastectomy scheduled for Oct 30th. PS is also going to place the expanders.
I meet with the RO tomorrow and have an echocardiogram on Wednesday. So much for having a break after chemo!
I feel good mentally and am getting stronger physically. I'm looking forward to getting my heart rate under control.
I hope you are well!
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Thanks for the congratulations! It is day 5 PFC, I am doing well, but definitely still some side effects. Mostly constipation, that hopefully should have resolved by tomorrow. I also have sporadic tingling on my legs only lasting for a few seconds and then disappearing but coming back a few hours later at more or less random places. I think this is some form of neuropathy. Weirdly, I have nothing in toes or fingers. My onc said that it is possible to have weird sensations all over the body, so that is what I have probably. It does not affect my abilities to do stuff, so not much of a worry. Hair growing VERY slowly, but it got quite cold in the Midwest, so a hat is a must anyway right now.
All signs of chemo ever happening have been removed from my house (stored away) and I manage to not think too much about it. I guess I soon have to find out what I need to prep for the surgery. I'll wait until after the 29th pre-op appointment to do that and just enjoy my freedom for now.
Hope everyone is doing well, in or out of chemo.
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Happyanyway- good to hear from you. So happy you have a set surgery date. You will be in my prayers on Oct. 30th.
Yes, appointments seem never ending, don't they? Hope your echocardiogram goes well. I met with my regular doctor today. My bloodwork looks very good, except for higher cholesterol. Will get it checked again in 3 months. I am trying hard with diet and exercise. I meet with radiologist for a followup on Nov. 8th.
Mightlybird01- Hoping that your tingling issues are only temporary. All other issues should clear up. They did for me. My last chemo was July 8th and I only have grown a little under half an inch of hair. It is coming in very thick, which is good. I still wear my beanies, scarves and wig when I go out. This too shall pass, hopefully soon for you too.
Hello to Jrom, Lacombattant, Palmetto, April, BAMR , and G1973, Kim, Mountainmia , and Santabarbarian. How is everyone doing?
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good morning all- busy week for me. Today my last drain is coming out. It is still producing 40-45ml a day but I have had it in since my node dissection on the 30th. Tomorrow I have a PET scan, meet with my Lymphedema team and oncologist. My MO called me yesterday and wants me to start the lupron shot and AI. Not sure which one I will be on. I think it is Aromasin (maybe?). Thursday I meet with the radiation oncologist and Friday it’s off to plastics for my second fill.
It was interesting to hear my MO presented my case to the tumor board last week. I would like to know more on “why” since I tend to worry about everything, lol! She did also want me to join the Natalee study. Anyone else doing this one or any studies?
Good luck on the upcoming surgeries! Love to all
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Nice to hear from you, Happy Anyway and UpstateNYer... !
Things are good with me. In about 6 weeks I'll be one year PFC, & I am 7 months post final rads. S I am about a year ahead of you all. I feel wonderful. My energy is back and my body is pain free. I have not had a blood test since August but I can feel my blood is improved from then in terms of energy.
For hair-awaiters, mine is a 'medium' length 'Meg Ryan' shag now. Longest pieces are past my earlobes and half way down my neck. Its thicker before and more body/wave than before. I have not colored it and likely I am off the highlighting bus permanently, as I am ok with my very dark iron grey. It's basically my maternal grandmother's old hair color, which is kind of a lovely link to her.
I do still have a few random 'sensations' in my breast, but nothing painful. Guessing its the nerves hooking back up? My armpit is still numb from the sentinel node removal. I don't really notice it much. I never had plastic surgery as my Lx turned out so well I did not want to mess with it. I am a teeny bit lopsided but basically it's the unevenness most women have.
When they say it can be a year to feel fully normal again, I think that's about right. Even over the summer I would still get exhausted from a big day but now that does not seem to happen anymore, though I stick to a reasonable bedtime & same time taking melatonin, to stay in my circadian rhythm.
My MO said if I wanted a MRI he'd order me one but his position is that I don't need it unless it would really help my peace of mind. I am thinking about it and feeling it might be wise to have one in December (one year after surgery) as that way it would be staggered 6 months from my last Mammogram. Being as TNBC is most recurrent early on, mammos and just 2 annual MRIs would see me through my 3 year window with a 'peek' every 6 months. Tempting... but still undecided.
The road gets easier and better!! The chemo brain goes away and the fatigue resolves. But the joy and gratitude to be alive do not fade. I am very grateful to be well. I think often of the women with worse outcomes, and feel the best way to honor them is by being fully aware of my luck.
Thanks for letting me feel like a part of this group-- you guys are AWESOME!!
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Hello May family! I got back from my cruise yesterday. It was fabulous. I got a little sun, some great rest, good times with friends, and I gained 5 lbs back of the 16 I lost on chemo! So much food and drink... lol.
Today, I had my appointment with my SO’s PA. She gave me my MRI results. I didn’t get the pCR I had hoped for, but the tumor did shrink significantly. It previously had a volume of 1700 mm3 and now is only 184 mm3. So that’s good I guess. She briefly (!) described the surgery and pre/post op care. The haste didn’t give me comfort at all.
She also told me that my port won’t be coming out during this surgery, which bummed me out. I think I may call my MO tomorrow to figure out why, because honestly, I’m not doing any more chemo.
Tomorrow, I have my pre-admission tests (bloodwork and ekg) in the morning. And surgery’s coming in 13 days!
Jrom and mightlybird- congrats!!!! on the finish! I’m sorry I missed the final times for y’all, but am so very happy Nat and you are done.
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SantaB.. thanks for the 1 year recap. It does help to know it takes time, and that you are feeling pretty much back to normal.
G1973, hooray on the drains being removed and I wish you luck on the AI and the shot. Minimal side effects please!
Palmetto, glad you had a great time on the cruise.
I am back from Chicago. we stayed downtown, on Michigan Ave on the Magnificent Mile. Ate our way thru the city, did the boat tour, went to The Bean (and walked around the Millennium Park), Nutella cafe, Lou Malnati's, Portillo's, Eataly. A lot of things were closed bc it was Sunday and Mon was a holiday (Hemingway house was closed). We were hoping to see a show too. We did catch some of the Chicago Marathon and some of the Columbus Day parade. Spent yesterday in Lincoln Park, hit up the zoo and walked around the park/neighborhood, and ate some more
Also did a lot of window shopping and browsing. My daughter spent Sat night at Loyola with her friend and they did all sorts of college girl things together. I wore my wig one of the days bc it was so cold, but it feels so weird on my head. We did lots of walking and my energy held up quite well. I start my AI's today. I'm also hunkering down on getting some healthy food in the house and hoping to get to the gym. I worked out at the hotel gym while I was gone and it felt pretty good. I'm stiff and out of shape but after I got going it wasn't too bad.
Happy to be home and in my own bed!
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