Dis Breast Cancer Survivors Part IV - GAGWTA

[Pea-n-Me]

My husband has to do it for me. He's thrilled about it lol.

My husband did it once, when DD had to work. God love him, he did ok, but he was a little rough.

 

[dez1978]

My husband did it once, when DD had to work. God love him, he did ok, but he was a little rough.

I sent my husband approx 37 youtube and tiktok how tos and we survived the first week. Now that we have the hang of it, we're going to make some adjustments this week and see if we can get a better fit around my hairline. I am 100% sure that at least once during this 12 week span we will have an argument over it in the middle of the infusison room lmao

 

[Pea-n-Me]

I sent my husband approx 37 youtube and tiktok how tos and we survived the first week. Now that we have the hang of it, we're going to make some adjustments this week and see if we can get a better fit around my hairline. I am 100% sure that at least once during this 12 week span we will have an argument over it in the middle of the infusison room lmao

I didn’t have the nice Penguin set up, I missed being able to get it by a day, so I had the cheap one! Lol. But we worked with it. We had to put the ice packs up inside the cap, then put it on my head. We realized weeks into it that there were seams that didn’t have ice, and that’s where I was losing my hair. So we got some more ice packs and had to put them in in addition to the ones inside the cap. Then because it didn’t feel tight enough on my head, we put a bandana around the whole thing and tied it tight. (Once I used a cotton cap I’d worn that day as we forgot the bandana. Way to improvise!)

Anyway, DD managed this for me pretty well. She was shown the first day by the lady’s mom who was in the infusion room next to mine, though they had the nice Penguin. On the one day DD couldn’t come with me, she showed DH what to do at home the night before. As I said, he did a good job, but yanking the thing down over my head and jamming the ice packs up there afterward with his big hands was a little rough, haha. It’s worth it to save the hair, but it is a lot of work, and relaxing during chemo wasn’t possible as the caps had to be changed out hourly or more (I had two). But also with all the fluid they gave me I had to go to the bathroom a lot which meant taking off the cold boots and mittens and dragging the pole in, etc., too. First time I had chemo we didn’t have any of that, and I think it was more relaxing then.

 

[dez1978]

I didn’t have the nice Penguin set up, I missed being able to get it by a day, so I had the cheap one! Lol. But we worked with it. We had to put the ice packs up inside the cap, then put it on my head. We realized weeks into it that there were seams that didn’t have ice, and that’s where I was losing my hair. So we got some more ice packs and had to put them in in addition to the ones inside the cap. Then because it didn’t feel tight enough on my head, we put a bandana around the whole thing and tied it tight. (Once I used a cotton cap I’d worn that day as we forgot the bandana. Way to improvise!)

Anyway, DD managed this for me pretty well. She was shown the first day by the lady’s mom who was in the infusion room next to mine, though they had the nice Penguin. On the one day DD couldn’t come with me, she showed DH what to do at home the night before. As I said, he did a good job, but yanking the thing down over my head and jamming the ice packs up there afterward with his big hands was a little rough, haha. It’s worth it to save the hair, but it is a lot of work, and relaxing during chemo wasn’t possible as the caps had to be changed out hourly or more (I had two). But also with all the fluid they gave me I had to go to the bathroom a lot which meant taking off the cold boots and mittens and dragging the pole in, etc., too. First time I had chemo we didn’t have any of that, and I think it was more relaxing then.

Mine are changed every 25 mins from 50 mins before the taxol, thru 4 hours after. I am fortunate that the taxol is just 1 hr. So I have pre meds, then herceptin which is 1 hr, then the taxol. So basically we get the dry ice around 10 am and put the 1st cap in, 20 mins later the 2nd one goes in and 20 mins later the 3rd goes in. Get to the center for labs at 1015, see dr, start meds around 1115. 10 mins into herceptin I put the 1st one on and then just every 25 mins after. So as much as I'd like to sleep when that benadryl hits, I can't. I also have to figure out a way to wear my glasses more comfortably bc I am blind as a bat lol. it's about 6 hours overall. It could be worse. I know some chemo regimens are several hours long. If I can save 75% of my hair it will be worth it! Tho nothing could have prepared me for -30C on my head!

What shampoo/conditioner did you use? My hair is already so dry!! I wasn't prepared for that already. I have curly hair so I already use pretty moisturizing stuff but dang

 

[#1hoosierfan]

LMP. I am sorry to hear this latest news. I am always thinking of you.

 

[Pea-n-Me]

Just checking in to see how @luvmarypoppins and @dez1978 are doing. Any updates lmp? Dez how did your second chemo go?

What shampoo/conditioner did you use? My hair is already so dry!! I wasn't prepared for that already. I have curly hair so I already use pretty moisturizing stuff but dang

I continued to use my regular shampoo and conditioner, Herbal Essence Rose Hip. I wasn’t too good about doing things as they were suggested.

 

[luvmarypoppins]

Pea-n-Me and dez - prayers for you both
I am seeing the breast cancer surgeon on Tuesday. They have 3 but one is retiring so there is a male who is highly regarded and a female who ds3 friends wife had. They were going to give me the guy but I kinda pushed for the girl. Another of ds coworkers had the retiring lady. She said she had just a lumpectomy and radiation. Ds3
Says he doesn’t think any Dr would want to do regular chemo with me.
What should I be asking the surgeon Tuesday.? Ds3 has the day off so he’s coming too.

 

[Pea-n-Me]

Pea-n-Me and dez - prayers for you both
I am seeing the breast cancer surgeon on Tuesday. They have 3 but one is retiring so there is a male who is highly regarded and a female who ds3 friends wife had. They were going to give me the guy but I kinda pushed for the girl. Another of ds coworkers had the retiring lady. She said she had just a lumpectomy and radiation. Ds3
Says he doesn’t think any Dr would want to do regular chemo with me.
What should I be asking the surgeon Tuesday.? Ds3 has the day off so he’s coming too.

Hi lmp, you sound well. Have you had a breast MRI yet or seen an oncologist yet re the breast cancer? They usually glean a lot of information from the MRI, so that, along with the biopsy results, can give them a pretty good idea of what your treatment options will be. (They look not just at the breast but the corresponding lymph nodes, as well, on the MRI.)

When visiting the surgeon they’ll let you know, based on what information they have about your particular cancer, what surgical options you have. There has been a lot of research for a long time on recurrence and survival rates with mastectomy vs lumpectomy with radiation. In the old days years ago they did radical mastectomies more often than needed, and women suffered with big swollen arms after removing many lymph nodes, and they walked around the rest of their lives missing a breast, etc. (I cared for many of them.) Today things are so much better, thankfully.

When I updated my own research just a bit recently before my own surgery, what I saw is that many people today choose lumpectomy with radiation if that’s a possibility, and that this option is showing the best survival rates, by a hair. (Mastectomy rates of course are good, too.)

https://www.breastcancer.org/resear...rates-than-mastectomy-for-early-breast-cancer

It certainly is for the most part an easier surgery than a single or double mastectomy, especially in older patients (like us!) So if lumpectomy is a possibility for you, that would be good news. Less anesthesia time and simpler recovery. Radiation has its own issues but for most people it’s not too bad. Chemo is something, if deemed recommended for you, you’d have to get more information about. Depending on the type of cancer you have there are other medications they can offer, as well.

Have your son bring a notebook to take notes. My DD (nurse, also) did this for me, too. And it came in handy a few times when I was trying to remember details.

How long will the surgery be? What does it involve, exactly? What is the recovery time? (Could be longer than normal given the other issues you have going on.) What are the risks? What is involved with follow up? Will any lymph nodes need to come out? Sentinel node biopsy? What are the risks of lymphedema in arm with lymph node surgery? Is radiation recommended? Chemo? (These may be questions they refer you to an oncologist for.)

More: https://www.breastcancer.org/treatment/surgery/what-to-expect/questions-to-ask-surgeon

General with any surgery: https://www.breastcancer.org/treatment/surgery/what-to-expect

Not sure I did this justice. These cases are all unique and there are so many nuances with all of them. Hoping your case was caught very early and you can get it out with the least amount of disturbance and sequelae as possible. It’s so good your DS3 helps you with and through all of this!

 

[luvmarypoppins]

Good evening all. My head is spinning from the visit. Not to mention they canceled it the original day as we were pulling out of the driveway. I was so upset emotionally.
Surgeon was great. She remembered ds friend wife. She said it is dcis. 1.4 cent. Her neg. And something is an 8 which she said is a good number.
She said my options are
1. Take hormone block pill for 5 years
2. Surgery, 5 weeks daily radiation and still take pill for 5 years
I said if it’s your mom what would you do. Said talk to the breast cancer medical oncologist. Going there to hospital Tues.
Said I am a surgeons dream. - Sarcastic because she said her neck hairs stood up when I said aortic dissection. She would want cardiac and vascular clearance.
She’ll be on vacation for 2 weeks soon.
So if anyone has taken this pill please tell me your side effects. I am reading joint pain, blood clots etc. Don’t know how this would interact with all my meds and history etc.
Any information appreciated.
GAGWTA

 

[Pea-n-Me]

Good evening all. My head is spinning from the visit. Not to mention they canceled it the original day as we were pulling out of the driveway. I was so upset emotionally.
Surgeon was great. She remembered ds friend wife. She said it is dcis. 1.4 cent. Her neg. And something is an 8 which she said is a good number.
She said my options are
1. Take hormone block pill for 5 years
2. Surgery, 5 weeks daily radiation and still take pill for 5 years
I said if it’s your mom what would you do. Said talk to the breast cancer medical oncologist. Going there to hospital Tues.
Said I am a surgeons dream. - Sarcastic because she said her neck hairs stood up when I said aortic dissection. She would want cardiac and vascular clearance.
She’ll be on vacation for 2 weeks soon.
So if anyone has taken this pill please tell me your side effects. I am reading joint pain, blood clots etc. Don’t know how this would interact with all my meds and history etc.
Any information appreciated.
GAGWTA

DCIS is good news, lmp. It means it’s not invasive.

To answer your question, I just started on the hormone blocker arimidex a few weeks ago. I have had no side effects from it so far. I asked the same question within the past few pages and there were some replies (all favorable, if I recall).

Glad things went well for you. Good to see the oncologist but sounds like the outlook is very positive. So glad.

 

[Pea-n-Me]

@dez1978 How are things going for you?

 

[#1hoosierfan]

LMP - There are a few different pills they will probably speak to you about it. Tamoxifin is what is given to women who are premenopausal and those that cannot tolerate the armotase inhibitors. I am almost positive that this is the one that has an increased risk of blood clots. Aromotase inhibitors are typically given to women that are post-menopausal. There are 3 different ones. These are the ones that can cause joint pain and accelerate/cause ostopenia and osteoperosis. I have been on Anatrozole for 2 years (an AI) I have had virutually no problems with it. If you start on one and it causes problems the doctor will switch to another and then the third. I think this is pretty common. Most women take the hormone blocker for 5 years. I will be on mine for 10 years due to my higher risk for recurrence. I actually just had my 2 year dexa scan to check my bones last week and it has not caused any bone loss at all so far.

Hope this helps.

 

[luvmarypoppins]

Happy almost fall everyone
Saw the bc onc. He said my cancer is invasive. I told him what the radiologist told me and I questioned it. It was only not in the lymph nodes of the biopsy sample. He also told us he trained my reg onc. Everyone is on the same page. 6 months of leitrezole then retesting. If the tumor shows no sign of shrinking then it’s the surgery, radiation and pill. I have already had joint pains.

 

[luvmarypoppins]

Happy October to everyone!
How is everyone doing? Wishing you all the best. Check in when you can.
Had mri and it showed my sacrum tumors are stable so no chemo pills. Also he said only see reg onc every other month now. Thank you God. That’s a real answer to prayer.
Cardiologist said more lasix to help with leg swelling.
My cousin didn’t like the new Epcot lounge but liked the new pirate one at MK. Next trip he’s going to YC and Pop.
Little grandson is crawling, clapping, waving and loves Winnie the Pooh.
GAGWTA

 

[Pea-n-Me]

Happy October to everyone!
How is everyone doing? Wishing you all the best. Check in when you can.
Had mri and it showed my sacrum tumors are stable so no chemo pills. Also he said only see reg onc every other month now. Thank you God. That’s a real answer to prayer.
Cardiologist said more lasix to help with leg swelling.
My cousin didn’t like the new Epcot lounge but liked the new pirate one at MK. Next trip he’s going to YC and Pop.
Little grandson is crawling, clapping, waving and loves Winnie the Pooh.
GAGWTA

You sound good, lmp. How are things going with your breast cancer?

 

[Pea-n-Me]

@dez1978 How are things going for you? Thinking about you, too.

 

[Pea-n-Me]

It’s been a while since I updated. I wound up having to get a second opinion on my radiation plan. I wasn’t comfortable with the first plan because it was quite a bit different than what I and my doctors expected and prepared for, and was based on just one study that had come out this past summer. According to the second radiation oncologist I saw, my case was different than those in the study, so results wouldn’t necessarily apply to me. She recommended a more conservative plan, and my oncologist and I were in agreement, so I wound up going there. That all took a little while. Still in the planning phase but will finally be starting next week.

Tomorrow I’m getting my first Reclast infusion, and in December I have to start on a CDK 4/6 inhibitor, Verzenio. I just started reading about these and praying that side effects are minimal. Has anyone here had them? How’d you do?

Continuing to pray and go to Healing Masses.

I hope all here are doing well. GAGWTA

 

[Pea-n-Me]

I also saw this last week. Maybe it means that other states will follow. I hope so. Dealing with this on my own was tough. If oncology infusion centers get and keep this equipment on hand, it will be a lot easier on patients getting chemo.



My hair is coming back in nicely, btw. Glad I did the cold capping. At least I wasn’t completely bald. You could see my scalp in spots, but just wearing a thick headband and having some hair in the back made it pretty workable while I was in the chemo stage. I had people say they didn’t know I had a hair problem, that they just thought I was wearing a headband for style. (For people reading here and wondering about this in the future.)