Starting Chemo May 2019
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happy- I think that is great news! Cheers to clean margins:)
J- love the photos. My mom is in Mesa and so jealous of all the great trail systems you all have
❤️❤️❤️❤️
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Jrom- I will pray for Nat as she has surgery tomorrow, as well as for her speedy, se free recovery. What a long process this has been for many of us. I am sure she will do great. Loved the Sedona pics. Beautiful country.
Happyanyway-It is great news that your margins and nodes were clear. I would not be too concerned about the 6mm of cells found in the tissue, as it has now been removed and gone. I am guessing that you won't need radiation. Will you still do a rads consult?
Lacombattant- how many more rads appts. do you need? How are you feeling?
Hope everyone has a good week💞Pat
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Hi All!
Jrominger, my most heartfelt wishes to Nat. Praying for the best outcome possible! The pics are stunning, thank you so much for sharing.
HappyAnyway, I echo what others said: awesome news that the margins are clear and no cancer found in the nodes. The small amount of active cells that was left post chemo is removed, I wouldn't worry much about it.
UpStateNYer, I completed 17 out of 25 treatments, thank you for asking. So far no major SEs, some skin discomfort and some fatigue but this has been expected. How are you doing?
G1973, have you & your MO decided on the trial? I heard about NATALEE, unfortunately Swiss centers don't participate in it, otherwise I would try to get in.My MO is talking to Pfizer this week to see if I could be a candidate for Palbociclib trial ...we shall see, I guess
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Lacombatteante-
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HappyAnyway.. glad to hear from you and that you are feeling ok. hope each day gets better and better
Jay.. how is Nat doing?
Florida was very nice and relaxing, although my hubby had a bike accident (another racer came to a dead stop in front of him for no particular reason, while he was going 21MPH, he is very banged up and was not able to finish the race. Very sad for him, he's resting and has chest wall contusion. Other than that all went well
I have run into a huge bump in the road with my PS. I received a call yesterday that bc he is out of network, the reimbursement rate isn't high enough and they would like $2500 now or they won't do surgery. I spent a lot of time on the phone with my insurance company, my BS and other PS offices. I used this same PS for my previous surgery and there was no mention of owing money above and beyond the out of network reimbursements. And it's not the money really, it's the timing. They received prior auth on Oct 8th but waited till 1 week before surgery to throw this at me? I can't shake that they are trying to exploit the situation and the delicate timing of post chemo surgery time frame. I meet with them today, have a consult with an in network PS on Monday. I am prepared to do the mastectomy as scheduled and reconstruction at a later date. Not ideal, but I just don't see how my current PS can possibly make me feel better about their practices. The next few days will shake out some plans. I spent a lot of yesterday crying. I love this PS and felt 100% comfortable with him doing the surgery. But there has to be someone in network that will be a good fit as well. Now that I'm not doing nipple sparing, it's not that complicated of a surgery. BS is contacting my MO to see how many more weeks he's comfortable waiting. Like I said, lots of plans should come to light in the next few days. I am frustrated but I know all will work out for the best.
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Hi April, i had to reread your post couple of times, because I could not believe my eyes. And when I did get it, Hans had to bring me down from the ceiling because I literally flew off the handle. A Doctor? No, a certifiable a**hole! For crying out loud, you are seeking his services not because you are after watermelon-size boobs, you are a breast cancer patient and you need his professional help with reconstruction after double mastectomy.... And letting you know just one week before the surgery...I have no words only that I am so so sorry that this is happening to you. Fingers crossed you find a better PS in network, please keep us posted!
PS. Your hubby must be so frustrated about the race, hope the contusion will not keep him on sidelines too long and he will be back to training and racing very soon.
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April- I totally agree with Lacombattant's assessment of your situation. The timing of PS's correspondence with you is totally unacceptable. They probably knew this info a day or 2 after submitting to ins. Sounds fishy that he is suddenly "out of network" when he was before. I am so sorry that you must scramble to find a new PS. I will pray that all works out well for you. I am also sorry to hear of your hubby's iron man accident. Hope he will feel better soon.
Jrom- How is Nat doing after surgery? It's quiet around here without your posts. Getting a little concerned.
Lacombattant- you are almost through with rads. Glad se's are not too bad. I go for my rads followup tomorrow. Unfortunately , I will be seeing a different RO. I was told that my original RO is unavailable, no reason given. Kind of ticks me off , as she knew me well and I had several questions to ask her.
Hello to everyone else, positive thoughts and prayers always.
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Dear May group, just checking in before my surgery tomorrow (UMX, no reconstruction). I have to report at the hospital at 5:30 am, surgery is at 7:10am. So it will be an early start. I will stay exactly 24h in the hospital, hubby can spend the night with me there.
We just came back from a 5 day trip to Kentucky, mostly hiking, but also seeing some horses. We did some "bolder training" so hopefully this will help with the big boulder climb at our May group reunion
April, sorry to hear about your struggles with the insurance. I hope it will work out for the best for you and you can get the reconstructions you want!
Jrominger, can't wait to hear how Nat is doing. I expect the first couple of days are a quite big struggle. I will surely know soon enough. Hope everything is going well.
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Upstate, bummer on the unavailability of the RO. This is indeed annoying. But so glad you are done and only need a follow-up!
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Mightlybird, good luck tomorrow! Wishing you successful surgery, clean path report and easy recovery. Well done on boulders work:) here, the weather is terrible so our hiking plans are on hold.
UpStateNYer, I hope that your follow up visit tomorrow goes well. I will have my last visit with RO next week. No follow up with RO is foreseen after treatment (unless I have some serious rad-related complications) which I find a bit odd, but it is what it is.
Jrominger, when you have a minute please let us know how Nat is doing.
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MightlyBird! Praying you get a good nights sleep and all goes well tomorrow.
And I have good news. That awful lady I was dealing with yesterday was a third party company they hired while their usual lady is on maternity leave. They have no intention of charging me anything and were bending over backwards to make it right. So all is well and everything is back on track. Phew! But thanks for getting upset with me. My God I was furious.
I agree an update on Nat is needed.
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Hello G1973, UpstateNYer, LaCombattante, and April0315.
Mightlybird01, thinking of you and your pending surgery. Praying that your surgery and recovery are complication free.
Jrominger, please stop by and give us an update. It can be short and sweet.
Best to you all!
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Hi everyone. I’m sorry I haven’t responded sooner.
April I’m so glad that everything worked out on the PS issues. I almost private messaged you too see if I could go in with you. I’m the sweetest guy until you mess with my friends and family!! So pleased for you. What a wreck for your husband!!! Dang How is his chest now??
Happyanyway It sure sounds positive on your situation and ever onward!! How are you feeling and how is your brood??
UpstateNYer what the heck why the change in the RO at this late date?? How are you feeling post rads??
Lacombattante almost done with rads!!!! Let’s say a prayer for better hiking weather for you over there!! I hope your SE are minimal and that you are feeling great
Mightlybird. Many prayers coming your way for tomorrow!!! Natalie said to tell you. We were eating lunch with our daughter less than 24 hrs after surgery giggling like a bunch of junior high girls. So you will do fine!!!!!!!! Great pic!! We’ll be ready for the spring fling
Natalie did well. I lost my mind when they wheeled her back. My daughter had to escort me outside so we wouldn’t tarnish the family name by my blubbering. A little under 2 hrs. Recovery was 1 1/2 hrs. Too long. Nat has never been under so she threw up when she came to a number of times. But was soon herself. Her pathology final report came out today. NED praise God!! No node node involvement!! And the pathologist said there was no evidence of the tumor whatsoever just the clip where it once had been!!! Again Praise God!!! 4 drains and 2 catheters in her back for pain meds. I remove the pain catheters from her back muscle tomorrow. We’ll know about rads on Wednesday. Praying we won’t have to.
Blessings to all of you and truly thank you for all your prayers and thoughts. Let’s keep battling on!!
J
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Good to hear from you, happyanyway! Hello to you too!
April- So happy to hear you are now good to go. I can certainly identify with being told different things by Dr's offices and insurance companies. This year proved that 😣. Makes one's head spin. You can rest easy now.
Mightlybird01- I will be praying for you tomorrow and wish you a smooth, pain free recovery with a clean pathology result. Loved the posted pic. You look so strong and confident.
Lacombattant- I wonder why you are not getting an RO followup? But, will be so nice to be finished with rads. Will you be seeing MO for your next followup? My MO doesn't want to see me until next Sept. I thought that odd with me being on anastrozole. I will see SO next April and get MRI and Mammogram sometime before that. I will know more tomorrow.
Jrom- Praying that Nat is doing well post surgery. Looking forward to hearing from you soon.
We got our first snowfall today-ugh! Not looking forward to Winter.
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Jrom- We must have been posting at the same time. Let me be the first to congratulate Nat on the successful surgery, NED, with no nodal involvement. I can certainly understand the emotion you felt when she was taken back. So very sweet. I am praying that Nat won't need rads. It seems like she will not, fingers crossed.Thanks so much for posting.
I am feeling very good post rads. Compared to chemo, it was a walk in the park, so to speak. Not sure why my regular RO was not available. They would not tell me. Perhaps it is a medical leave. I will see what they say tomorrow.
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UpstateNYer posting at the same time just means great minds think alike! Im very happy you are feeling so well post rads!! Please let us know what the RO thinks. Next September to see MO seems like a long time!!! Just means they are very confident. I’m with you on the winter stuff. It use to be fun. Not so much anymore!!
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Jay, so happy to hear about Nats surgery going well, her feeling ok now and the glorious path report. What a wonderful update!
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j- so happy for you guys! Cheers to NED!
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Jrominger, I am so, so happy that Nat's surgery went well and that they found no cancer. Fantastic outcome! Praying for the swift and easy recovery.
April, great to hear that it got all sorted out, I hope the temporary employee will be fired with a record in her file that she is not fit to work in the medical field
UpStateNYer, my RO 'releases me into my MO care'. To be honest I will not miss them ( I had two ROs, a lady who came highly recommended by my MO and her assistant, a young doctor who has been handling my case directly). Somehow we don't connect, perhaps because they are always rushed - the radiology department in my clinic gives an impression of a conveyor belt. I found our weekly visits pretty much check the box type. I am surprised that your MO thinks that the next visit can take place almost a year from now. I think it's way too long, given that you are on AI. I used to have MO check ups every six month, now it could be even more frequent - will find out when I see my MO on Nov. 18.
Mightlybird, you are in my thoughts today,
HappyAnyway, how are you doing?
Wishing everyone a very nice and relaxing weekend
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So good to catch up with everyone here. It sounds like you're all making great progress through treatment. Frustrations, scares, some anger and upset, lots of tears, but mostly good news. That makes me very happy.
I've been well but overly busy with real life, for which I'm grateful. I had a bang-up birthday party 2 weeks ago. It was an open house, timed not to interfere with our university's football game. ;-) Lots of friends came by to share their good wishes. We did the food pretty simply, bought a platter of deli meats and a pretty tray of fruits from a local grocery; made a big slow cooker full of (store-bought) meatballs; pretty veggies, a couple of dips, beautiful cupcakes my daughter made. I sorted the trash the next morning and put the paper plates in compost, the plastic cups and bottles in recycling, and ran the plastic forks through the dishwasher to use again another time. Cuz that's the way I am.
We've been hiking and walking. I go to the gym regularly. I'm back to working on quilts with more of my time. I've been taking a Spanish class and volunteering with the English (ESL) class. We've gone to concerts and granddaughter's high school play and out to dinner and ... Today I deliberately did LESS, because we've been so busy.
So life does return to normal in many ways. And I think there are some things that probably never go back to the way they were. But life is like that, isn't it? We never know when something wonderful or something terrible will come along and rock our world. And then things are never the same again. But we keep going. We're resilient and strong. Sturdy and flexible. We keep going.
Wednesday I'm going to have surgery again. This time is a plastic surgery reduction for my healthy breast to make it more symmetrical with the cancer breast. It will be pretty minor, not much different from the lumpectomy, I think, with no node excision! It's a bit of vanity on my part, but I'm eager to have it done.
Tuesday I see the breast surgeon oncologist for my last follow-up with her. Then my after-treatment care will be managed in my hospital's "survivorship clinic," with a NP in charge of scheduling exams and scans. I think I see her in early February for the first time. In the meantime, I'm just supposed to go on with life. Okey dokey...
Best regards to all of you. hugs and kisses all around!
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Mtnmia. What a fabulous and confirming post!! Thank you! I read it to natalie and her mother and they loved it. Again thank you. Praying for your surgery coming up. I bet it will be a breeze for you. Thanks for checking in!
Mightlybird, anxious to hear from you. Praying!!
Nat is doing very well. She didn’t have to take any narcotics. 2 of her drains should be out on Monday and the others on Wednesday. Her chest looks different but fantastic. She is a warrior princess as are all of you!
J
Jay
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Hello! Just a brief check in, we are back from the hospital. All went very well. No pain at this time, no meds so far. I don't have a path report yet, but the surgeon said everything was super straight-forward. As I had negative sentinal node dissection and tumor excised prior to chemo, and MRI which showed no evidence of disease, I don't expect any negative news, but of course one never knows. So waiting for a real relieve that this is al over for another 8-10 days, until they have thoroughly examined every millimeter of my breast tissue. Now I will rest and write more later.
All the best to everyone and thanks for all the thoughts and prayers. It carried me right through surgery.
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Mightlybird awesome awesome news!!! I have been praying for you!! Glad to hear from you. It all sounds extremely positive. Natalie didn’t have to have any drugs and 3 of her 4 drains are hardly draining any more! Anxious to get those little extraterrestrials out of her!! She just slight pain in her left arm pit. Keep us posted.
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Wow, so much news! Wonderful and hopeful. Love to all the May warriors!
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Wow is right! We are all moving right along. Congrats to Happy, Nat and Mightly for completing surgery. I pray everyone is handling the post surgery well. Is anyone going to join me on the November radiation thread? I was hoping to have started by now, but they haven't called to say they've completed my mold. I'm starting to grow a little hair, and my biggest problem now is trying to decide whether to shave under my arms or not. RO told me I wouldn't be able to once radiation starts, but right now there's not much to shave. Haha! First world problems, right?
8 weeks PFC and I still have taste problems and I'm still losing toenails. I was originally told 2-4 weeks PFC should do it. Well, maybe not for me but here's hoping all the chemo side effects are disappearing for all of you.
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Hello all,
I saw substitute RO last Friday. It was very uneventful. I still have slight changes of skin coloring of breast after rads, but everything else was fine. He examined both breasts and underarm areas, both were normal. I will have MRI and mammogram next March. I need to call RO in Feb to get authorization number for ins. to pay. What a hassle. Then followup with SO in April. I guess we alternate between RO and SO every 6 months for 5 years, but RO said I could do the 6 month exams with my regular doctor if I wanted. Got to think that over. What does everyone think??
BAMR- sorry to hear about the taste problems and losing toenails this far past chemo. What a pain it is. I pray things get better for you. Good luck with rads, I found it very doable.
Hi Santabarbarian!
Mightlybird01- Thrilled to hear you got through surgery ok. Glad you are NED at this point. Yes, you will feel much better after getting a clear path report. Rest easy and take care of yourself.
Jrom- Glad to hear Nat has minimal pain and not needing narcotics. Nice that 2 of her drains come out tomorrow.
Mountainmia-Thanks for your wonderful update. You have a very fulfilled and interesting life. Happy belated birthday. Sounds like you had a great time with friends. We are almost on the same schedule for follow ups and scans. I will pray that your reduction surgery goes well on Wednesday. Please keep in touch.
Lacombattant- sorry that you were not given a lot of personal attention by RO's. I was leary of mine at first, but I have come to really like her. I am not too concerned about seeing my MO yearly. She will respond to my emails if need be. And so far there are no issues with anastrozole.
Hello to Happyanyway and April.
Hope everyone is having a nice weekend. Prayers are said twice daily for all of my May chemo friends. Stay strong. 💞👍
Pat😳
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First things first: congratulations to Natalie for such a great surgery outcome! How amazing to not have any tumor left! Since mine was gone prior to chemo, I will never know how I responded. This is a bit upsetting, but on the other hand, what I DO have is a thorough anatomical analysis of the whole tumor mass when it was still alive. It showed that large sheets of tumor infiltrating lymphocytes were slicing through the entire tumor. I think this is why it was labeled "medullary features" because it had these massive sheets of lymphocytes in it. My immune system has tried its best to destroy that bugger or at least keep it in close check. As a molecular biologist with a strong interest in cell biology, I find this so interesting, and I can't wait what the future research will find out about how the immune system can attack cancer, especially for triple negative cancers. As a step towards that goal I have given consent that all leftover tissues, all my imaging, blood, urine, stool, DNA and RNA will be included in the University of Chicago's newly established research project, a large scale biobank containing 15,000 people when completed. I'll be just an anonymous donor, so won't have any direct benefit, but maybe contribute to new insight on how breast cancer can be cured in the future, without chemo and possibly even without surgery. How exciting would that be.
It is now 2 days since the surgery and I must say that I did not expect to be quite so exhausted afterwards. I went for a slow 30 minute walk today, but that was basically it. Other than that only laid on the couch. My taste is off again, and my vision a bit blurry (though back to normal now), both of those things due to the stupid Zofran they gave me to prevent nausea. Well, I did not have any nausea, but the typical zofran 4 day after effects, which I really do not like. My throat was sore a bit (also expected) and I had not much appetite. The surgery only lasted 1h20 minutes, but I was under much longer (I think up to 4h). I assume they do all the washing and planning in the 2.5h before as I have lots of blue marks on my chest. Since University of Chicago is a teaching hospital, maybe there is some time for teaching students involved too. I spent one night in the hospital, and was released the next morning at 8:30am.
As of today, I have zero pain, not even soreness. I did not have to take any pain mediation. Of course there is this weird numbness now, which will take some getting used to. But I know it is still early days, pain still can show up later, so I am careful, especially with my pre-existing shoulder problems. Poor hubby will have to muck stalls for at least a month, possibly through winter.
I have 2 drains, one has already stopped pretty much, and the other is slow going. My post-op is on the 19th, but I am hoping that maybe I can get the drains removed earlier. Sleeping is a little difficult, as I am a side sleeper. I cannot sleep on my back. I currently sleep on my left side. Not sure of this is ok, but no-one gave me any instructions that I had to sleep on my back, and so I just sleep on my good side. It will be a long 9 days, as I am not supposed to move my arm much at all until the drains are out. There is not much I can do without my dominant right arm!
My scar and chest looks good. I was a bit worried seeing it for the first time, but I was totally fine when I actually saw it. It is just a thin line, no bruising or any distortion. It is only covered with a "skin-like" tape, which I can see through and take showers. No dressings or anything like that. The scar from the port removal I have not seen yet. But that one is small enough to not worry me at all.
BAMR, so sorry to hear about your taste. Things sometimes just take a bit longer. My hair is coming in very slowly too. No eyebrows to speak of and all body hair are still totally gone. My head hair is growing in, but it also seems very slow. Good luck with the start of radiation. Keep us posted.
UpstateNY, I don't have any good answer to your question. It seems kind of variable who is doing the follow up. I think what I will do is just follow up with one Dr. that I trust most. In my case, I think this would be my breast surgeon.
MountainMia, so glad your social life is back on track!
April, last but not least, great to hear your surgery troubles have been resolved. I hope for a great outcome.
Santabarabarian, thanks for checking in and sending your love. Always appreciated!
Now back to the coach and the warm fire :-)!
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mightlybird having a lot of TILs correlates with better outcome-- so that is very good!!!
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Santabarbarian, yes, I know. This is the reason why I feel not so worried I don't know my response to chemo. Plus, when my oncologist first found out about that medullary feature, he said that I may not need chemo as this type is usually not spreading. In the end I went for second opinions and a whole tumor conference on my tumor, and no-one, including the first oncologist was comfortable enough to clearly recommend no chemo for a grade 3 triple negative. Research is just not there yet. And I was not willing to take that risk on my own.
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hi everybody ♥️
just checking in to say that tomorrow morning im scheduled for my last chemotherapy.
i still read this thread and it brings me so much joy to hear that my little chemo family seems to be moving forward and making progress every day. surgeries, further treatments and regular ol' life stuff has been keeping us moving.
i had my lumpectomy back in March with no evidence of disease so the next step for me is radiation, and then on to enjoy the 26th year of my life with (hopefully a fresh new start.
love to all
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