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claoh

Awesome news Roc!!! prayers for continued recovery, good news, and a wonderful trip to Mexico!!!

LovesPrimes

Hello, friends! I wish there was more discussion on this thread but I understand we're all busy. I hope everyone is practicing good self-care. I'm so excited for your upcoming trip @RocDocVic !!

I had a post-op last week and I was down to just one very, very small incision area that had not closed. The PA said I didn't have to wear the binder any more, I could start some exercise but take it very slowly, and I could wear a soft bra if I wanted to. I'll go back again mid-April and should receive my "final clearance" whatever that means.

I still have a slight bulge on the right side of my stomach; it's been there since day one after surgery but we kind of expected it to resolve when all the swelling went down. But it's still there and still tender. They think it's just how fat distributed after surgery but they ordered an abdominal CT scan for this Friday just to make sure. I certainly don't want anything to be wrong but if it is just how things distributed, then I'll have to decide whether I'm willing to live with it or if I want to undergo revision surgery. Actually, I have to decide if I want revisions period but this bulge will definitely be a consideration. And Friday morning, I noticed and the OT commented on some slight bruising at the top of my stomach. Husband concerned that the bruising showed up a few days after I stopped wearing the binder, like the binder was preventing some bleeding or something. Just have to wait and see.

Work is going a bit better. Still remote. Not going to try going in-person until after the scan. Still having a terrible time getting up. E-V-E-R-Y-D-A-Y. 😔

I hope to hear updates as you're able. I'm thinking of you and praying for you!

claoh

Hi Love, I agree the posting has really slowed down. Guess it may be we're all in a period of stable ness? if that makes sense. I'm half way through chemo and nothing is really changing.

Sorry to hear about your bulge and bruising. Did you ever get to go to Disney World a couple weeks ago?

I will share I went to a community sale this past week and picked up a huge wall sign that just said "thankful"

That is where I am. I know I started this journey consigned to live out my 2-3 years, then got the tumor growing outside my breast. That became the greater evil over chemo. I have thoroughly enjoyed watching the tumor shrink and it has lifted my spirits. To also know that the tumor grew outside rather than inside is very encouraging and a blessing. I can't even feel any of the lumps under my breast so figure the chemo is doing a great job. Who knew I would have such a change of mind and heart.

Love and prayers to all of you.

marlakeeth

Good morning all!

Today is Monday the 25th of March and my journey has been noteworthy but unable to comment. I had my lumpectomy Feb 28th and everything was going well. Starting March 9th or so, small amounts of I had mucousy-like stool which lasted a few days, then vomiting with a high fever by Wednesday the 13th. I was so sick! My neighbor came over to check on me while throwing up. I could hardly walk and by this time I had massive liquid stool. He called 911 who took me to the hospital where I remained for 8 days! I had C Diff, a serious colon infection. IV's Scans and bathroom trips for uncontrolled diarrhea for the first 4 days! My son stayed with me for the first three days and took care of me. My husband did laundry every night since I soiled my underwear and pajamas every day! Had PT in the hospital for strength and balance training which helped. Right now on my way to see the radiation oncologist. Will update as I can. Take care ladies. By the way, this was all caused by the antibiotics given in surgery which was not told to me beforehand.

RocDocVic

Quick update on my surgery recovery. The swelling finally started to come down but I'm still bruised, especially across my abdomen and left arm. I've had drainage of lymphatic fluid and some blood from the incision under my armpit. I'm changing the bandages 2+ times per day. My surgeon said its ok for the drainage because then it will cause less pressure and less likely to swell up there. I have another appointment with her this Friday and hopefully I'm cleared to fly to Mexico. I'll be taking extra bandages with me in case it's still draining then.

I see my Oncologist tomorrow morning to talk about my pathology report results. I checked MyCharts and if I read it correctly it was a pCR for the tumor. Pathologic complete response, so the chemo drugs and the Herceptin and Perjeta worked. No cancer cells found in tumor mass or surrounding tissue. No cancer cells found in the 3 Sentinel lymph nodes either. Surgeon made referral to the Radiologist Oncologist. I'll see her when I get back from Mexico. Don't know what the pCR and negative nodes mean for radiation treatments though. Maybe fewer treatments??

Beyond that I'm not sure what my Medical Oncologist will recommend. Hoping its just the Herceptin and Perjeta IV drugs for now since I know I can tolerate these two HER2+ targeted drugs. If so, I'll probably be on these through October or mid November for the 1yr treatment plan. Take care everyone. Glad to hear from ya'all. Be well.

claoh

Once again, my heart falls to read of the difficulties others are experiencing.

Marla, can't imagine the ordeal you went through. Could anything have been done differently with the antibiotics for the surgery?

RocDoc, hope you are able to go to Mexico in spite of the draining. Good news on pCR!!

LovesPrimes

So… I had a mini-crisis last week. My CT scan that was scheduled for last Friday got moved up to last Wednesday BUT on Tuesday, the imaging center called me to let me know insurance had denied it. I contacted surgeon's office and they sent a second request under a different diagnosis code. Called insurance and they said it would take "2-15 business days to review". So, rescheduled CT scan to April 17 but I've already been notified that the second request was denied as well. My response to all this was very much disproportionate, like the logical, rational part of me knew my high blood pressure, anxiety, and stress were not reasonable for this situation but it didn't change how I physically felt. I tried non-medicinal coping strategies at first. Went outside and sat in the sun and let the dogs run around while I played a (normally) soothing game on my phone. It didn't work and I couldn't get back to work feeling that way. Ended up taking 1/2 a Xanax and going to bed for a nap.

I was copied on the denial letter and it basically boiled down to breast cancer doesn't justify an abdominal CT scan, which, of course, completely disregards the type of reconstruction surgery I had. It's infuriating; I hate insurance so much!!! I guess the next step will have to be a peer-to-peer between my doctor and the faceless doctor at the insurance company who has never seen me but somehow knows what medical care is appropriate for me?!?

I realize I'm venting again. I think this has touched a nerve because my breast MRI last February was also declined at first. It ended up happening a month later after my GYN did a peer-to-peer with insurance. And it was precisely that MRI that found my cancer EARLY. AND a mammogram would not have caught it. (The reason for the denial then was because I needed "to have at least one first degree relative with ovarian or breast cancer". I have two. My sister died from ovarian cancer and my mother from breast cancer. So, again, faceless doctor who I've never met and who clearly did NOT even spend 30 seconds on my chart, declined what my doctor knew to be best for me.)

I'm still really struggling to get up and functioning in the mornings. I'm thankful we were able to go to an Easter service Saturday night and I slept until almost noon yesterday. Tomorrow, I need to go in-person to work for at least a half-day and, unfortunately, I need to be there by 9. I don't know how I will do it. If you're so inclined, please pray for me!

claoh

Will be praying for both getting up tomorrow morning to get to work by 9, and to get your CT scan.

LovesPrimes

Hello there! I try to check in at least weekly. I'm sorry that it's been a couple weeks now.

I did make it to the in-person meeting at 9:00 AM a couple weeks ago. But I got home about 3 and by 4, knew I had to nap; I was exhausted. I usually take 30-45 minute naps. That time, I laid down at 4 and didn't wake up until my husband got home at 6:45!! My next time in-person will be next week.

Had post-op this morning and they are likely in the peer-to-peer call with insurance right now. If they can get a verbal authorization code, I can go ahead with the CT scan that was rescheduled for tomorrow. PA didn't like the bruising on my belly. Yep, OT doesn't like it. My husband doesn't like it. I don't like it. Please, let's figure out what is going on!!

I don't have much to report otherwise. I feel like mentally, I'm doing so much better. Physically, I have no strength or endurance YET. And I still am having a heck of a time getting going in the morning.

I'd really like to know how you all are doing. Please update when you can.

LovesPrimes

marlakeeth

Good morning,

It has been a while since I updated my posts. For LovesPrimes, my heart goes out to you. Hopefully, you can get the CT scan done. As for me, I am feeling well, starting my radiation tomorrow and for the next month, five days a week for 20 treatments. That is about all for now, hopefully, I won't have much to report for a while! Take care all.

claoh

Love and Marla, glad to hear all is going well.

I have my 12th chemo tomorrow of this regimen. Then I will have 4 more on two different drugs, one being the red devil. Did question why I was getting that brew every two weeks when it is recommended every 21 to 28 days. Answer was because I'm also taking Keytruda and on a lower dose. I have been pleased with my dr. giving me lower doses through this, so glad to hear.

The exterior tumor is GONE!! And I don't feel any internal either. It has been a pleasure to see it shrink. Not wearing any type of bandage, just a regular bra.

Saw my general dr this morning and she said not to go back on cholesterol meds until after cancer issues are resolved, even though LDL is elevated, but not higher than it's ever been. Pleased that my blood pressure is in normal range, a side benefit of losing weight!!

Again, so glad to hear from you!!

RocDocVic

Good afternoon everyone. I'm still here in Mexico and extended for one week more. My recovery from the lumpectomy and lymph node surgery has been much slower than expected. Drainage finally stopped and bruising gone. Still slight swelling of my breast and very hard dense area where the tumor was removed. When I return I will restart the Herceptin and Perjeta targeted drugs, visit surgeon for Ok to start radiation treatments. I have mid May appointment to meet the Oncology Radiologist to see what she proposes. Hoping it will be reduced because of pCR pathology report for both tumor and lymph nodes.

On a bright note, my hair has really started to come back since I've been here in Mexico. I'm not wearing my chemo caps very much. My head is finally able to breathe. Hoping I'll not lose what hair I've grown due to upcoming Perjeta treatments, but it is very likely I will. People here in Mexico are very accepting of my bald to semi-bald head. Too bad it's not like this in the US. I've decided to not wear my chemo caps much when I return. I do have a couple of nice Wallaroo

brim hats for the pool because of the sun. My head needs to breathe fresh air too. Picture is me celebrating my bald head at the beach ⛱ 😎

Hope everyone is doing well.

claoh

beautiful photo Roc, I noticed your good amount of hair first thing. Perhaps loving the tropical sun!!

Today found out I have a blood clot in left leg. Had Dr. notice swelling left foot and mentioned it felt heavy and dull and made me change my gait. Really thought it was part of the chemo and almost didn't mention it. Be super vigilant with new stuff 😊

Now on blood thinning medicine too.

RocDocVic

https://csn.cancer.org/discussion/comment/1714728#Comment_1714728

Thanks Claoh! I had very little when I arrived 2 weeks ago. My friends here can't believe how quickly it has grown. Sun and fresh air, I believe, have helped it tremendously. Just have to be mindful of sunburn. Sorry to hear about the blood clot. Glad they caught this. Be well. Hope the new meds work.

LovesPrimes

Quick update - the peer-to-peer call got pushed to the next day so I didn't get approval for the CT scan until the day of the scan. But it got approved and it happened and the report went to surgeon's office Friday. I have a significant amount of fluid buildup in my abdominal wall. In one spot of the orders, it is referred to as a seroma. In another, an abcess. Anyway, I check in to the hospital (intervention radiology) tomorrow morning for them use ultrasound to drain and analyze the fluid. They will also re-install a drain and have me wear the abdominal binder again for awhile to help keep fluid from building up again. This is outpatient and I know next to nothing else. Will it hurt? How long will this take? How long am I going to have a drain again? I am really bummed about this but, at the same time, relieved I don't need another surgery, at least for this.

claoh

Thank you for update Love. Glad you got approved and it will be addressed so quickly. Will have you in prayers.

My hiccup last week was a discovery of a blood clot, but it was also addressed immediately with blood thinners and the swelling of foot went down within 24 hours. Don't know if they'll do another ultrasound Wednesday to see if it's gone or just assume.

I start the new regimen of every other week Wednesday with two new drugs. One is the red devil - uck! Hear so much negative about it. Good news is only 4 more chemo treatments!!

LovesPrimes

So glad you're down to 4 treatments, claoh!

My appointment with intervention radiology went very quickly and smoothly. They used ultrasound to put the tube in, took a sample, and then installed a drain. I've seen lab results in my chart but not sure I understand them. I think they found no sign of infection but I have "heavy cellular debris". Hopefully, they will explain this at post-op tomorrow and take out the drain. After the first day, it hasn't produced all that much.

I'm planning to go to work in-person Wednesday. This will be my second time since this surgery. Hoping I have a little more endurance this time.

Have a wonderful week!

claoh

Good news love!!! Hope it goes well for you Wednesday.

I did not do chemo last Wednesday because of low blood counts. Instead, husband and I went to local furniture consignment shop we like in Lakeland, then to a restaurant we don't have in our home town. Was even able to go to Bingo Wednesday night, which I don't usually do.

Hope we can do the chemo this week. Was surprised they didn't give me shots to raise blood levels, so we'll see.

My left foot is slightly swollen again, so just messaged to see if I should go back to the 4 Eliquis a day rather than the current two. Also just read where Eliquis can lower blood cell levels - so treat the blood clot or do chemo?

Sometimes there are no straight answers, but we adapt.

LovesPrimes

Still have a drain. It's demoralizing but I do understand that stuff that should not be collecting inside me is coming out and we want it out. I'm just so tired of having a drain and all the restrictions that that means (like no swimming even though it's 90+ degrees here). But this Saturday will mark one-year since my mastectomy, so one year cancer-free and I'm going to find a way to celebrate the occasion. (Originally, I thought we'd be doing roller coasters at Disney but can't do that either.)

I hope you lovely women are healthy and doing well. @claoh how will you celebrate finishing chemo? It's coming soon!!