Jan 13, 2020 06:22AM April0315 wrote:
Here you go Jay! Sorry about Nats cold and hope today's appointment goes well!
Regimens, side effects, and support from others going through chemo.
Posted on: Apr 21, 2019 04:04AM
Have been trying to find one started for May 2019 with no luck.
Starting 4months of AC+T May 2nd every 2 weeks. Scared out of my mind and not sure where to start. I still feel lost about the whole process. Do you meet with someone before it happens or do you just sit in a chair and they start?
Posts 1591 - 1620 (1,626 total)
Jan 13, 2020 06:22AM April0315 wrote:
Here you go Jay! Sorry about Nats cold and hope today's appointment goes well!
Jan 13, 2020 10:35AM mightlybird01 wrote:
Good luck tomorrow/today(?) jrominger. One more step to go. I believe you guys are true experts now.
Wonderful photos April. I bet this trip was just what the family needed.
Jan 13, 2020 06:06PM UpstateNYer wrote:
April0315- Nice pics, enjoyed them, looks like you had a fantastic time in Kona with family.
Jrom-how did Nat's appt. go today? Hoping her cold is getting better.
I had to be put on antibiotics last week as cruddy cough was getting worse. I am feeling much better this week. Hoping to be more productive this week.
Hoping everyone will have a good week.
Jan 14, 2020 07:38AM jrominger wrote:
UpstateNYer Mightylybird Thank you for checking on Natalie. The appointment went fine. Surgery scheduled for 2/12. Dang BRCA2. This surgery will eliminate any chance of ovarian cancer. So good to get it done. It’s just a lot to go through. Supposed to be less than an hour of surgery!
Her cold is better. Just a rough cough. UpstateNYer I’m happy to hear yours is improving with antibiotics. How are you now??
Praying for everyone!!
Jan 14, 2020 05:07PM UpstateNYer wrote:
Jrom- Glad that Nat's appt. went well. Soon all of the procedures will be behind her ( and you). You are being proactive, but still so much to have gone through on this this journey. Now, a healthier, happier future is in store.
Hoping Nat's cough is getting better. Mine is hanging on, but getting better. Is Nat taking antibiotics?
Jan 14, 2020 09:19PM jrominger wrote:
Pat, this has been a long journey. Almost through it! The idea of another surgery is not fun. But with the BRCA2 she has a 45% chance of getting ovarian cancer. With this surgery it drops to 0%. I love those odds!! Her cough is pretty bad but she did a ton of things today. No antibiotics yet!!
How are you. Praying that your cold will disappear immediately!! Hang tough. Thank you for thinking and praying for Natalie.
Palmetto my condolences to your Clemson Tigers 😫
Jan 15, 2020 08:06AM palmetto wrote:
Ugh! I just wrote a long response with individual call-outs, and it got eaten by the internet gremlins! I hate when that happens! So I'll try to recap:
Jay- thanks for the condolences! I'm proud of our season, even if we didn't come away the kings of college football this year. Glad to hear Natalie is scheduled for surgery on 2/12 and will have ZERO chance for ovarian cancer. What a blessing! Mightly- I've had fun reading about your nutritional adventures and your thoughts on getting a horse. I think it is so important for us to take care of ourselves and find joy in daily life! Your trip to Germany also sounds like a fantastic plan! April- thanks for sharing the pics of the family vacation to Kona. They are fabulous! I'm so glad you had a good, relaxing time. Pat- hope your cold is subsiding. Where are you in upstate NY? I was thinking of making a trip to Saratoga Springs in March and thought if you were close by, we could do a BCO meetup!
As for me, I started Tamoxifen last week. I've been taking half doses to work it into my system gently. Tomorrow I'll start full doses. I have my revision surgery scheduled for 2/11. They'll close the flaps, do a breast lift, do lipo to smooth the abdomen out, use that fat to fill/shape the breasts, and do scar revision. I'll be so excited to have all this mess behind me! And I've started my book! I'm already on chapter 3. I had forgotten how much I actually enjoy writing. So May family, I need a focus group, and I hope you can help. How apt would you be to buy a book titled, "Who the Hell Keeps a Side Chick with Cancer?!" One of the things I never spoke about last year was dealing with the fact that the man I had started dating a few months before my diagnosis was married-- a fact I learned during chemo. It was heart wrenching, but the book has actually helped me process my emotions. I'm no longer homicidal! Ha! Seriously, it's been very cathartic. But I'd love your thoughts as I create this "masterpiece"!
Sending love and light to all of you!
Jan 15, 2020 08:54AM mightlybird01 wrote:
Palmetto, so nice to hear from you and your book project! It is a huge commitment. I can surely see how it is very helpful processing emotions when writing things down. And thank god you are no longer homicidal!! This is certainly an interesting "twist" to a cancer journey, that is not commonly (ever?) talked about. I am not sure if I would have bought the book, simply because dating is not part of my reality at this point in my life (but of course now where I know my May family of which you are a part of I will be your first customer!!), but I am sure there would be plenty of people interested. There is the cancer aspect and the dating aspect. Both have so many emotions and how they interfere and/or complement each other is very interesting and maybe very helpful for other people who are in the same boat.
I have put my trail horse deluxe on the back burner for now. Instead, I will make a large effort this spring to see if I can get my mare back to do light riding. She has been doing great lately and I will hire a trainer (so I don't have to be in this on my own) and see how far we can come. If this is not fruitful I will look into a new horse. But, after having had horses for almost 40 years of my life, I know that each and every living creature will have some sort of issue, so I may as well stick with the ones whose issues I know very well :-)!
Jan 15, 2020 10:45AM LaCombattante wrote:
Hi May family! A very overdue check in. I've been crazily busy with return to the office as well as with the household stuff.
Jay, just one more step for Nat and you, and then it is all over. I hope that Nat gets over her cold soon but if the cold persists, then perhaps antibiotics are in order. UpStateNYer, sorry to hear that d*mn cough is still bugging you! A prayer goes up for you and Nat to get better ASAP!
April, love the photos, you all look lovely.
Mightly, good plan to stick first with your mare - devils we know are always easier to deal with :)
Palmetto, writing is cathartic - go for it! And yes, I would certainly buy the book. Good luck with Tamoxifen!
All, I think and pray for you daily. We've been through A LOT together, the bond is very real.
Jan 17, 2020 01:04PM HappyAnyway wrote:
BAMR, my original port was removed during my BMX. I had my first Keytruda treatment today. They had to use a vein in my arm because my new port doesn't work. My MO ordered a scan to see what's going on. Ugh.
LaCombattante, your photos are beautiful and uplifting. Thank you for sharing. And yes, I adore my MO. I agree, I feel very connected with our group.
Jrominger, your pictures are lovely. Natalie and you look like you enjoyed your anniversary. The first landscape photo looks like it could be a postcard! Good for your mother for walking so much daily. I have an Instant Pot, too. I use it often. I can relate to the cancer center dread. I experienced it myself this morning. My doctor and nurses are fabulous. Just can't believe that I'm back in the chair every three weeks for a year. Praying for a smooth surgery and recovery for Nat.
Yay UpstateNYer! You look beautiful. So happy to see you. I hope you are well.
Palmetto, looking good! I like the flag picture, too. Clemson had an awesome season. I hope Tamoxifen treats you well. I will be thinking of you on February 11. Good for you for writing!
Mightlybird01, I'm sure you will be relieved to get your dental work done. Your post regarding fruits and vegetables made me hungry. Now I want a salad. I also enjoy making homemade soup. Thanks for sharing the cronometer site. I hope your mare does well. That's sweet.
Santabarbarian, Keytruda may raise my glucose. If it does, I'm going to ask my PCP for metformin. Thanks to you and jrominger for sharing information on supplements. I'm taking notes.
April0315, what a wonderful vacation! Now I'm ready for the beach!
I would like to hear from those of you who haven't posted in while. I know I haven't been on much either. Just want to know that you're alright.
Love to you all!
Jan 20, 2020 12:42PM mightlybird01 wrote:
HappyAnyway, thank you for checking in! What a pain that the new port is not working. I hope they can fix it. And the Xeloda is going well. I too would like to hear from everyone that has started with us, but in many ways I totally understand if we don't. I wish I would not check this forum quite as often as I do ;-).
I got my custom made breastform today and it is amazing. Now my breasts feel the same again. It is very light weight, only weighs 77g (whereas they removed 200g of breast tissue), and I can even swim in it. I don't even have to have a special pocket in my bra to stuff it in. Just put a bra on and slide it between bra and skin. It matches my skin color and even the nipple color. So if I bend over and someone would see a bit into the bra, one would not immediately notice it is a breast form and not a real breast. Once a year I can get a new one. I can't imagine I will need it that often, but maybe in the summer with a lot of sweating it would be nice to have one to switch out and let dry. That's what the lady suggested, that once I have a second one, I can always switch them out if I sweat a lot. I got also a new sports bra. Can't wait to try that one to night with my pilates.
Hope everyone is doing well. Still no winter coughs or colds over here, so I am sure it will come sooner or later..
Jan 21, 2020 09:11AM HappyAnyway wrote:
Hi mightlybird01. Good news regarding your breastform. It sounds like it looks natural.
I had my port scan this morning. There's a kink in the tube in my neck. My surgeon called me directly and has me scheduled to visit his office tomorrow. He's going to numb it, open the incision and pull the kink out. I'll be awake. Thank you, Xanax.
Just received a call from the NP from my MO office. My liver enzymes have climbed again. My ultrasound was fine. Now I have to get a CT scan on Saturday. I'm supposed to go out of town for an overnight trip with my sister and daughter on Saturday. I'm thinking of telling them to go without me.
I'm being pushed to my limits.
Jan 21, 2020 12:05PM mightlybird01 wrote:
HappyAnyway, so sorry to hear about the kink. It is upsetting. They should have checked right then when they put it in. I remember they took an x ray right after I was back in the wake-up room to make sure it was positioned properly. But in any case, shit happens and we need to live with it. I am sure this too will go well.
The liver enzymes are not good news either. Probably just because of the Xeloda? I found some study suggesting that this does occur, but usually is not too severe and self limiting. Good job you get it scanned just to be on the safe side.
I keep fingers crossed for Saturday. Let your daughter and sister go by themselves if that is what is best for you. I am sure everyone only has your best interest in mind. I am sure better days for you are just around the corner! Remember, you are basically back at the starting line, and that was the worst time of all. Once everything is settled and you start your treatment, you'll be feeling much better. Hang in there.
Jan 21, 2020 12:20PM UpstateNYer wrote:
So sorry to hear that there is a kink in your port tube. Hope all goes well for you tomorrow. I will be also praying for a clear CT scan and that you are still able to go on that overnight trip. May do you some good to get your mind off things for a while.
Mightlybird01-Glad to hear that your breast form looks and feels good. That is just wonderful.
Palmetto- I would definitely purchase your proposed book. I live in Rochester. That is about a 4 hour drive to Saratoga. Maybe we could meet halfway? How are you doing on tamoxifen?
Hi to Lacombattant and Jrom, hope you are both doing well.
Jan 21, 2020 01:13PM jrominger wrote:
Happyanyway. Gosh dang kinks and enzymes. This too will pass and get better!! Praying all the time for you! I’m with UpstateNYer if you can go on the trip after the scan I would definitely go. Get your mind off of things for a bit.
Natalie is on the phone as we speak with BC/BS regarding a bladder scan that is needed when she has her ovaries taken out just to make sure it’s covered. BC/BS is calling the center to verify. It’s always something!!! Wish we didn’t have to do this surgery but when it’s all over we’ll be glad we did.
Mightylybird Natalie has her new prosthetic breasts as well. She got the smallest they make and she slips them in her new bras. She looks spectacular and no one is the wiser!! So cool. Glad yours is working out as well
UpstateNYer I just love seeing posts from you no matter what the subject!!! Hope you and yours are doing well.
Jan 21, 2020 02:25PM HappyAnyway wrote:
Thank you for sharing the link, mightlybird01. I wonder about the Xeloda, too. The NP said they may back off of the Keytruda. I told her that I was administered my first round of Keytruda after my labs were drawn. SMH. Now I need to research the possibility of Keytruda causing further liver stress. Of course there are timelines that these meds are most effective. I do feel like I'm back to square one. Although I am grateful for the new treatments, a break sure would be nice. If I had a break, I'd probably want to be in active treatment. The grass is always greener...
Hello UpstateNYer and jrominger. Thanks for the encouragement.
Mightlybird01 and UpstateNYer, I like your profile pictures. BTW UpstateNYer, I like your wig, but think your short hair is beautiful.
Oh yes, jrominger, new year, new deductible and out of pocket. I have a feeling we'll meet ours rather quickly.
Thanks once again everyone. I am blessed to have you in my life. Please be well.
I'll let you know how the in office procedure goes.
Jan 21, 2020 07:21PM santabarbarian wrote:
HappyAnway I am sending you some hugs! What an ordeal. I hope things smooth out for you very soon.
Jan 22, 2020 09:34AM - edited Jan 22, 2020 09:35AM by HappyAnyway
Thank you, santabarbarian.
The procedure went well. I applied lidocaine prior to the appointment, which helped. He opened up the incision on my neck. Used scissors to make more room. Tugged on the tubing to work out the kink and sewed it in place. He ordered another scan. I'm glad I tried the revision first. If it s unsuccessful, I have to have another surgery. He seemed confident that today's procedure worked.
Jan 22, 2020 04:22PM UpstateNYer wrote:
Thanks for the update, Happyanyway. Sounds like the revision was successful. Now praying for a clear CT scan for you on Saturday. Keep your chin up. Your May friends are here to support you. Pat💞
Jan 23, 2020 06:37PM palmetto wrote:
HappyAnyway, you’ve been on my mind. Sending you lots of hugs and support! I’m glad to hear that the port fix is done- now praying for a good CT scan. You are nothing short of amazing in your continued fight. I admire your strength and resiliency
May friends- keeping the rest of you close in prayer. Love and hugs 💕
Jan 25, 2020 09:40AM HappyAnyway wrote:
Thank you, palmetto!
They tried to stick me five times and couldn't access a vein for the contrast. They're going to try to reschedule me for Tuesday. That's when I have another scan of my port. If the port works, they will use it to administer the contrast for the liver CT.
I am going with my sister and daughter as soon as we leave the hospital. Looking forward to a night away.
Have a great weekend, everyone.
Jan 25, 2020 09:55AM mightlybird01 wrote:
HappyAnyway, thanks for letting us know. Have fun on your overnight trip! I am so glad that you will be able to make it.
Jan 25, 2020 09:35PM jrominger wrote:
Happyanyway I have been praying. Thank you for letting us know. Enjoy your time away!!! Praying everything goes smoothly on Tuesday. Clean scan and a perfectly working port!!
Jan 28, 2020 08:58AM LaCombattante wrote:
HappyAnyway, I am praying for only good news today!
Hope that your liver enzymes are elevated because of treatment and the increase is transient. And - hopefully - the port works now and you don’t need another surgery.
I will be keeping my port for a while. The surgeon who inserted it flat out refused to remove because of my recurrence risk.
24 hours ago UpstateNYer wrote:
Happyanyway, Thinking of you as well. Praying for negative scan, normal enzyme levels and clear port line. Also, hoping you enjoyed your getaway with your daughter and sister.
Lacombattant-Sorry to hear that your port will still be a part of you for a little longer. Praying that you will not be in need of it in the future.
Hope everyone is having a good week. I have come down with another cold. Third time being sick since early December. I never got sick pre-cancer. My primary care doctor told me that my immunity is low due to treatments endured over this past year. I refuse to let it get me down, however. Hope everyone is staying healthy.
22 hours ago palmetto wrote:
Hey May friends! Happy Anyway, I've been praying for you today. Hope all goes well! LaCombattante, sorry about keeping the port. I will pray you won't need it ever again. Pat, please get better soon! I know the illnesses are frustrating. Are you taking elderberry? I believe that's the only thing that has protected me this winter, and our mountain cedar counts (to which I am highly allergic) have been off the charts.
I had my surgical pre-op appointment yesterday. The revision sounds like a walk in the park compared to the BMx and reconstruction. My mother will come back for a week to help me along. The doctor will close the flap windows (my "footballs"), which will create a breast lift, then he'll do lipo to smooth out the abdomen (around the love handles), and will do scar revision where I may need it. And y'all- the nurse told me that this is the one and only chance to get insurance covered lipo, so point out to my doctor where else I might want it. That was the WRONG thing to tell me!
Maybe another good thing to come out of all of this...
Oh, and I'm still writing my book. It's going well, I think. I am aiming to be done by June!
Sending love and light to all of you.
21 hours ago - edited 21 hours ago by HappyAnyway
Thanks to each of you. I love you all.
The revision didn't work. I will have the port replaced Friday afternoon. The liver scan hasn't been rescheduled yet. I'm hanging in there, just like the rest of you.
Here's to improved health for all!
21 hours ago - edited 21 hours ago by jrominger
Happyanyway. We've been praying like crazy for today. We are looking forward to hearing the good news about the port and liver enzymes!!! Please keep us posted.
Lacombattante. What the heck. I wish you could get rid of that little extra terrestrial aka port!!! There isn't going to be any recurrence any way!!!!!
Pat. Dang colds!!!! Maybe the elderly berry is the secret!!! Give it a shot. Praying you feel perfect soon!!
Palmetto. Sounds like all the reconstruction is going well and maybe some added benefits. Something good from all this is absolutely well deserved!!
Hang tough everyone. Praying for each and every one of you!!
We are in NM for 9 days watching grandkids and seeing sites. So glorious!