I unofficially qualified for this group early last month...

[dixiegrrrrl]

and today want to officially join, because discussions about other issues on DU somehow don't seem quite as important now as they did.

Went from mammogram to biopsy to mastectomy in about 3 weeks. Mastectomy was July 14.
Diagnosis is Stage II B, invasive Mucinous carcinaoma of left breast.

"Mucinous carcinoma of the breast — sometimes called colloid carcinoma — is a rare form of invasive ductal carcinoma (cancer that begins in the milk duct and spreads beyond it into nearby healthy tissue)." says Breastcancer.org, which is massively helpful site, I have been living on it practically, learning a lot.


In my case, post mastectomy, the treatment plan is for 12 weeks of chemo at rate of 3 times a week, then 5 years of hormone therapy to reduce as much estrogen as possible and starve the beast. The cancer feeds on estrogren.

So next week I see oncologist for 2nd time to discuss beginning chemo,
and I could really use handy tips and tricks and honest realities of what to do and not do on chemo.
Mr. Dixie is incredibly helpful, can very well handle everything the house and I need, thank god.

Have not started treatment yet but for the last 2 weeks have been very tired and sleeping a lot. I have a friend who in an RN who says that is normal, as the body recovers from the intensive surgery, and toss in my over 65 years, we don't bounce back as we used to.
But the surgeon says I am healing remarkablely fast.
I plan on asking about the sleeping thing when I see him this Monday.

Good news: Hospital for all treatment and test is 5 miles down the road.
And I do have Medicare A and B and the chemo AND the operation are on what Medicare calls an outpatient basis, so 80% is covered.

Gonna be reading y'alls posts now.......

[Solly Mack]

1. I slept through my chemo treatments because the very first time I was so scared

they gave me the good Benadryl. After that, I got it each time.

I did weekly blood work to see how my body was faring on chemo. I had to stop taking some medications because of harm to my liver, and I wasn't going to stop chemo, so I stopped my other meds. I had to get potassium chloride IVs from time to time.

My chemo mix caused a horribly bad rash on my face and upper body. Seriously ugly and scary acne like rash that I had to use heavy duty lotion - not moisturizer - on to reduce.

I got nausea pills and I did need them. The smell of food cooking got to me, and the thought of eating was unthinkable at times.

I was getting both chemo and radiation at the same time and there was some overlap of side-effects.

The thing you have to keep in mind that different people respond differently. Yes, there will be similarities but it really is different for everyone.



Both happy and unhappy to see you here. You know what I mean.

[dixiegrrrrl]

2. "the good Benadryl"???

The dr. and staff already have emphasized how important it is to take something at the first onset of nausea, because throwing up is hard to stop.

Funny thing...I had intentionally been dieting since May, and doing well, then came the big surprise, and surgery, and after that I had no appetite so lost even more weight. Weird way to hit my goal, but there it is.

How are you doing now?
How long ago did you have the chemo/radiation?
are you taking hormone therapy too?

And yes, I get exactly what you mean........

[Solly Mack]

3. Liquid benadryl, clear in color, through IV.

Enough to put me out for a good snooze.

I did both for 6 weeks. Once a week for chemo (Tuesdays) and 5 days a week for radiation. The first chemo treatment was a double-dose. That took about 2 hours. After that I was out of chemo in an hour, unless I needed other things. I got my blood work done prior to each dose. The radiation oncologist would add to the blood tests, so they took between 3 and 5 vials a week.

Yeah, I was hospitalized due to malnutrition and getting nutrition via IV and shots. I was in the hospital a month. Vitamin K shots hurt like a (insert very bad word here). This was after treatment ended. By body just went haywire. I ended up with a feeding tube for several months.


The radiation oncologist told me people with a little extra weight to spare did better in treatment - because of the potential weight loss. Still, it can get out of control - the weight loss due to treatment and the inability to eat. Keep in mind that my cancer was in my cheek, so my entire face and neck was affected. Hard to eat with a sore tongue and a throat that refuses to swallow.

I'm OK. Still not back to the old normal but adjusting to my new normal.

No hormone therapy. Didn't need it.

Keep us posted and know that we are all rooting for you!

[dixiegrrrrl]

4. "people with a little extra weight to spare did better in treatment "

Oh what a wondergul thing to hear!
I think I will slow down on the intentional dieting and just let the chemo do the job then.

Very glad to know you are doing so well, and that there IS sunshine on the "other side".
One thing I like about my docs now is they are good with the meds....pain..anxiety...insomnia...whatever, so far they are good about it.

[alfredo]

5. Welcome to the club nobody wants to join.

BTW, I lost 30 lbs. my doctor wasn't impressed and upped my 2Cal to 5 cans a day.
I did go on a carbo loading diet before treatment.

Good luck

[PennyK]

6. So sorry, dixiegrrrl

One important thing to know is that every iteration of cancer gets its own chemo regimen. So you might get some of the side effects and none of the others. They will give you a printout of your drugs and what each one can do to you.

The Benadryl is normally one of the drugs they give you, and yes, it does make you sleepy (it's Sominex, lol). Chemo itself doesn't hurt...you'll most likely feel the side effects over the next days. My regimen was just once every three weeks, very different from yours. And I started with that. I get my mastectomy next, and then possibly radiation and finally reconstruction. Then, I have to do a year on Herceptin.

I hope you do well. Everyone told me I was "strong..." I mean, what other choice do you have? I just suggest you have stuff to do when you're up to it...computer games, books to read, easy crafting or other hobbies (I sew and have been making stuff all through my treatment). Having a great partner is the best! Although he does make me laugh every time he comes back from the market with the wrong stuff.
Oh, and I recommend chicken soup when and if you can't eat anything else. I brewed and froze vats of the stuff when I was up to it. The shakes are good, too.

I know it's last minute, but really look into supplemental insurance. I've paid a total of $10 out of pocket thus far. Now the DRUG plan is not so good; I'm in the donut hole right now.

Keep us posted.

[dixiegrrrrl]

7. I am stockingup on Progresso Hearty chicken Soup, it tastes great.

But is rather salty. And hopefully have time to make my own before the merry go round starts, I make great soups and stews.
But am content with good quality canned stuff in a pinch.

"The shakes"?????? what are they?

Happily, I have my Nook for books and for music..nothing relaxes me more than some of the quality piano jazz of Gene Harris, I can listen to the same songs over and over, just turn into a marshmelow doing it. ( He, alas, is now gone, but his music lives)

An important question.....can I drive myself the 5 miles to and from the chemo? Assuming they do not zonk me out with meds too much.
.

[PennyK]

8. Boost and Ensure shakes

Most people think the Boost ones taste better.
I had extreme bad digestion the whole time, and I'm fairly sure you have a totally different regimen, so it was a shake once a day and a bowl of soup for dinner.
As far as driving, you'll be fine the first time...but see how you feel as time goes by. Your medical peeps should be able to advise you on this.
I have my iPad, but I mostly read books when I was there.
Hate to ask -- are you going to lose your hair? I did, and I just treated myself to a second wig today. My first was shoulder-length and I decided I wanted to try short. It's definitely more comfortable!

[dixiegrrrrl]

9. I was bluntly told I am going to lose my hair after about 12 days.

Breastcancer.org has links to wig sites, BUT since I retired, I rarely go anywhere, and it is still hot and humid, so maybe just a scarf.
I don't care what people think of how I look, that is so far down the list of priorities.

Funny thing, when summer hits every year I think I should just shave my head for coolness, like my adult son does, cause I really don't like messing with it anyhow.

Now I will get my wish, it will be hot and humid here till Oct at least. A short wig might be a permanent thing, ya never know.

[PennyK]

10. I can relate!

I'm in Florida.
I don't wear my store hair around the house, ever. And not to chemo. My head seems to be slightly larger than average (?), so even though I got a few hats, the only headcoverings I like are big loose scarves made of cotton gauze. I have one in black and one in navy, and when I don't feel like wearing the wig, one of those goes on my head.
Check THIS out! I made a few of these. Easy and fun. Look under Scarf techniques, T-shirt wrap. http://lookgoodfeelbetter.org/beauty-guide/new-hair-looks
After I shaved mine off (the wig lady did it for me), the stubble felt super coarse, and bothered me when I put my head on my pillow at night. I had to cut it even shorter on the sides. Some wear a "sleep cap" at night.

Oh! Have mints and hard candies for chemo, bring drinks, have lip salve...you may feel dry. My lounge is quite chilly, so even here, I always wore long pants, socks, and a comfy cardigan or jacket. They will probably have blankets, but I got a really gorgeous cotton-knit one on clearance at Barnes & Noble that I love.

Do you know if you're going to get Neulasta? It's a shot you get the day after chemo, and it stimulates your bone marrow to produce white blood cells (the chemo kills them, and this helps to build up your depleted resistance). And it's VERY expensive.
Hand sanitizer is your friend.

And always pee before they hook you up! Which reminds me, did you get a port?

[dixiegrrrrl]

11. Well, I am in SW Alabama so know too well the heat and humidity.

I was reading in Breastcancer.org section on hair loss, suggestions that one can use a satin pillow case, which makes the stubble more comfortable
(then again, a snug sleep cap will work)

I have to the unit for pre-admission stuff, and noticed it was quite chilly...all the staff were wearing sweaters.
Happily, I have several nice very light weight fleece wraps.
Do you know the purpose of the chilly temps????

Have not got port yet..I see the mastectomy surgeon for follow up on Monday and they say he will put one in, but when I do not know, since I won't be seeing oncologist till Tuesday, he will have, hopefully, gotten all the tests that I have been doing this week.

And I am now off for another fun run of testing..a Iodine contrast CAT and a heart echo gram.

Thanks for the tips.....I will be asking more, if I may, as I progress.

[PennyK]

12. Ah, tests

I think they keep it cold because I THINK it's supposed to discourage infection...I THINK.
I was told today that I will have my mastectomy next Friday (not tomorrow), and that because I'm on a blood thinner (long story), my plastic surgeon will want to wait until I go off it to do reconstruction. That means that I'm going to have to wear a fake boobie for a year. Bummer.
Anyway, I'm going to do a lot of supplies-collecting in the next few days, some yummy cooking, and a trip out of town to the nearest Joann's (sewing is my hobby) and also to TooJays, a pretend Jewish deli for a pastrami sandwich. Sounds like I'll be in recovery for a while, so I'd better have fun while I can! Going to be a long time 'til I can get to New York for the real thing...although I can possibly bribe my sister to bring some goodies when she visits next month.

[dixiegrrrrl]

13. First 10 days after mastectomy were not much fun

mainly because I like to sleep on that side and there is no way I could even turn to that side.
I ended up putting 2 big pillows on that side, in bed, so that I could not accidently move in my sleep.

I have to say everything healed very quickly, and this is almost 5 weeks later, I can drive, sleep on that side, and pretty much do anything but lift heavy stuff with my left arm.

[PennyK]

14. Thanks for that info

I should've been asking YOU for advice and suggestions! Ten bad days. That's a lot better than some of the stuff I've read online.

I looked around the 'net and found some ideas on making a belt for holding the drains in pockets. It kind of reminded me of the good old "sanitary belts" lol. I think I'll make two of them. I'll get some nice flannelette today and get started. I remembered that when I had my small surgery to remove what my doctor THOUGHT was a hematoma, I was really annoyed with my drain. This should help a lot.

I'm a leftie and I'll be divested of the left one, like you. So it might be difficult to do much. But ha! I eat with my right hand, so that I can do a crossword puzzle while I eat! So that's good.
I actually had breast reduction two years ago, and I had to sleep on my back then...also, chemo gave me terrible acid reflux, so I would lie on my back again. I'll bring in all the spare pillows from the guest room.

[dixiegrrrrl]

15. The drain containers were a PITA.

What I did was use safety pins thru the top tab of each "bulb" and pinned both drains to the thick layer of dressings that encircled me.
Really excellent way to go at night, cause I did not have to worry about accidentally laying on them. I don't sleep on my back and could not sleep on my stomach, so it was right side only as long as I had the drains.

For me, it was actually about 4 days that I needed pain pills, which was good cause the doc gave me lower strength ones than I could have really used.
After 4 days, the pills worked better as the pain decreased.
The area will be numb for a long time, thus the pain is less. I am 5 weeks out now and have very little feeling still in front, side, armpit, and even under upper arm.
Doc said it takes a long time to regain feeling and in some places feeling my never return.
I want to emphasize that the operation was on the same side as a very severe attack of shingles a few years ago and the shingles left numbness there also, so it is kind of hard to tell which is which now.
Everyone is different, and reacts differently, plus the age factor.

Sticking surgical pads, or in my case Kotex pads ( much cheaper) over the area under the dressing keeps normal pressure from bothering you.

Ya know, I have never had an operation, and they did tell me I would get morphine in the hospital. I had heard all these stories of people getting high on it and getting hooked. It ran as a drip in my IV. Did not feel a thing...no pain for 2 days, no high ( dammit), nothing. Excellent pain control.

[PennyK]

16. Wow, I had shingles a year ago

...but on the OTHER side.
I remember hating that drain so much!
So I realized this morning that I didn't actually nail down which of two hospitals that basically have the same name I'm having my surgery in! And here in Florida, doctors close on Fridays. I won't be able to find out until Monday.

I also need to ask whether I should get the Shower Shirt. Dr's assistant mentioned it to me, so I looked it up. It's a fairly waterproof garment you can wear on your upper half so that you can take a shower, and not get anything wet. But how is it even a decent shower, when you are covered from neck to waist anyway? I could get my husband to wash my back...and do the rest myself with a washcloth. $75 seems like a lot for something I may not need.

I imagine I'll be doing quite a bit of that tossing and turning as I get closer to my surgery date.

[dixiegrrrrl]

17. The trick to the shower

is for a bit cooler water than you are used to
and a bit gentler flow
and to shampoo and wash front body with hand cloth and soap with your back to the spray, using spray only to rinse.
You can also hold a washcloth across the incision line with one hand while rinsing off in front.

the PROBLEM is showering with only one and a half hands, since the affected arm is not going to want to move much initially.
And the same with drying off.
I dried off what I could reach, then threw on one of my many caftans, which dried me off pretty well as I moved.

[slipslidingaway]

18. Sorry to read you found your way to this group ...

but happy to read the above exchanges between Penny and yourself that offer tips and support for one another. Too often here on the cancer forum it is difficult to offer detailed help as the disease is so diverse and complicated we cannot envision the tests and surgeries one needs to undergo.

Wishing you the best.

[dixiegrrrrl]

19. Thank you.

I have found the older posts informative as well, esp. around chemo, which I have yet to start.

[True Dough]

20. Best wishes, Dixiegrrrrl

Hi. I was just taking a look around at some of the topics here at the DU when I checked out the health forum. While the Trump bashing (deserved as it is) rages in General Discussion and all the other related issues that arise there, you're right, none of it seems so important when you are facing the big fucking C.

I have been fortunate to remain cancer free so far, but my mom's side of the family is riddled with it. On my dad's side, there's heart disease everywhere. Dad's had a quadruple bypass and three heart attacks. Mom had breast cancer twice, the first time about 33 years ago and she was one of the first few lumpectomies performed in the area of Canada we were living in at the time. Then she had a recurrence about 9 years later and underwent a mastectomy. I remember her laying in bed afterwards with her skin looking tender and red on that same side of her body due to radiation treatments. She was tough as nails through both ordeals, staying strong for us kids, no doubt.

Both my folks were lifelong smokers, which surely played a role in dad's heart issues and mom's cancer, which came back in its final terminal form when it was detected as stage 4 in one of her lungs. It then metastasized into her bones. She lasted less than 3 months in that final go round. I took unpaid time off work as soon as I got the diagnosis and spent those last months with her. No regrets about it at all, other than wishing I could have done more.

Anyway, I wish you great strength, Dixiegrrrrl. I hope you have ample family support. Either way, you have friends here to reach out to. Take care!

[dixiegrrrrl]

21. Thank you for the good wishes.....

And yes, I am so lucky that I have Mr. Dixie who is very skilled in all areas of keeping house and body together.
Also good community/neighbor support.