Starting Chemo March 2015

Jackbirdie

sobering.

Thanks Special, you are always a wealth of good info. Even if we sometimes don't like it.

so-she-did

Trvler - keep calling around. My sister ran into the same thing when she was trying to find a place to get me a massage when she visited. She ended up finding an awesome place that did not require a prescription. The lady I saw is one a lot of chemo patients go to and she also does lymphatic drainage massage . She ended up being great! Since I wasn't comfortable on my stomach because of the port, she worked with me on my back and then flipped me from side to side. She worked on me for a half hour (her recommendation for chemo patients since our bodies are going through so much) for $35. I am going back right before my next infusion.

ninjamary

I just looked on the chamilia website for a sandwich charm and those weirdo's don't make one. I guess I won't bother looking for a shit charm now. I did find a cool skull charm which I must have!

I love the pictures of the dogs! I'll have to post my big bear one of these days.

MaryEllen - love the scarf you received. Thanks for the links!

so-she-did

Just read SpecialK's post after writing mine. I did not have a drainage massage so maybe I would need an rx for one but she did not mention it when I asked about it. Many of the places my sister called wouldn't even consider seeing me for a regular massage without an rx. We were working under a short time frame so I didn't want to bother with running to my MO for an rx but now that I am thinking about it, I should probably get one so that I can submit it to my insurance company in case they cover it (I doubt it but worth a shot) and also to have for a tax write off for medical next year.

Trvler

Thanks for the tip, So. And thanks Special. I have seen lymphatic massages on spa menus before and I know they aren't requiring a prescription. THEY were the ones who referred me to that place in the first place. You would think they would KNOW that.

IndyGal35

I just saw my bill for my first two chemo sessions (TCHP) and 2 hydration treatments in March.

The bill was 128K, but the hospital wrote off their negotiated amount, so the final bill for my March standing order is just over 90K.

un-freaking-believable

SpecialK

Important to note that anyone who has had SNB or ALND should be treated by a certified lymphedema massage therapist.  They are usually associated with cancer centers and hospitals, and sometimes regular physical therapy centers.  I would not personally use a massage therapist at a spa or retail massage location, doing the wrong type of massage on someone with a compromised lymph system can compound the problem.

Trvler

At this point, I have no specific issues. I don't really know what a lymphatic massage involves. I have some sinus issues after chemo and I didn't know if it might help or not.

SpecialK

trvler - essentially lymphatic drainage massage involves moving lymph fluid through the axilla and beyond (or other area such as breast or truncal where you have lymphedema) by very gently following a series of steps to encourage the lymphatic fluid to move through the interrupted, damaged or missing channels.  For me with lymphedema in the arms the lymphatic channels in the chest and back are opened first, and then the very gentle and specific massage begins at the fingertips, goes up the arm and then through the axilla and across and down the back and chest.  For someone like me, if someone unfamiliar with this type of treatment did the reverse the lymph fluid could get stuck in the arms and make the situation worse. 

BeatIt2015

SpecialK

Thank you for all that great info. So helpful.BS removed all 13 nodes under right arm due to 1 SN showing positive for cancer.

I try to do everything they've told me to do to avoid LE but I realize it's a bit of a crapshoot and a lifelong concern.

Thanks again.

SpecialK

beatit - because you have had more nodes removed than just a SNB I would also recommend a visit to either a certified LE therapist or a medical device fitter so you can be set up with compression (sleeve and glove or gauntlet) to wear for flying, exercise, or vigorous activity - these things particularly stress the lymphatic system.  It is a good idea to have initial measurements taken prior to any issues so that you have a baseline.  This is preferably done prior to surgery, but it will be helpful down the line should you have swelling - it helps to know so stage of LE can be correctly diagnosed.

BeatIt2015

SpecialK--Thank you, thank you. Will start looking for a certified LE therapist now.

SpecialK

beatit - excellent, you are welcome!  The really nice thing is that if you go for a LD massage it is very relaxing and refreshing, I was always sleepy afterward.  For a while I went twice a week when trying to get my LE under control and I really looked forward to the massage part! They can also show you safe ways to exercise while reducing your risk, and get you going on compression garments for preventive care.  Check with your insurance to see if they cover the garments - some do, some don't.  If your insurance uses HCPC codes for things like this PM me and I will send you the ones that worked for me, I was initially told the sleeves and gauntlets were not covered by my insurance, but with the right code they were covered in full.

mysunshine48

So, 4 days out from BMX...how does chemo compare? I have been so much in pain and sick. Am I looking at months of being nauseous and throwing up, not to mention all the other SE I read about women having on here?

Trvler

Mysunshine: I am sorry you are having so much pain. Can you get some stronger/better meds?

I know you are nervous about chemo and understandably so. But there are some people who have an easier time so don't assume you will have the worst side effects. When do you start? The first thing I would recommend is to find a chemo group that starts around your start time. If there isn't a group yet, start one. It's nice to be with people who are going through things at the same time you do. For example, I just lost my hair this weekend which literally plunged me into despair even though I knew it was coming. Another woman in our group was going through the exact same thing at the exact same time and we helped each other or at least she helped me.

This group has been our lifeline. The information is invaluable and the emotional support is beyond anything you can imagine and you will need it, even if you have few side effects.

SueH58

Well, good news, bad news. Good news is, I got the results of the mammaprint. Bad news is, it's high risk. So, I guess the dreaded chemo will be part of my journey. Need to see the MO so see what she will prescribe for me.

I googled sandwich charms and there are a ton of them! If you wanted, you could always add the letters "SS."

Trvler

I am sorry, Sue. I remember the point realizing I was going to have it after being initially led to believe it wasn't necessary.

Jackbirdie

oh my poor Sunshine! 4 days out is not the best time to think about what's next. I had a bmx on 12/18/14. The whole process is a nightmare for some. Others report only minor discomfort.

Here's the deal. Try to stay hydrated. If you are taking any opiod pain meds at all, please do yourself a favor snd start taking BOTH colace and Senekot. One softens the stool, the other encourages it to move. Hope not TMI. But believe me constipation can become a crisis if you don't take control now. I went over a week without going because the dr only recommended the colace and didn't stress it. You need both. Start now.

Also, you must try to get your protein intake up as much as possible. I didn't feel like eating much so I made fruit smoothies and added two heaping capfuls of vanilla whey protein. You are estrogen + so STAY AWAY FOM SOY (protein, or any soy product) Forever.

You must rest. Stay shead of the pain. If you wait till it really hurts you'll just have to take more. You're body can't fight pain and heal at the same time.

Use ice as much as possible. No heat. Itwill deaden the pain and will help reduce swelling. Ice all the time. Day and night.

And finally. Not one more thought about chemo right now. You need to heal from surgery. I mean it. Not one more word. Feel free to pm me if I can help with anything related to the surgery. I came home to an empty house and had to deal with those GD drains by myself. I was one sorry puss and I cried every day. You will get through this. Look at your feet. That's where you are right now. A gentle hug for you. You get in touch if you need me.

Katy

Trvler

Oh, god, Katy. I hate hearing you were alone after your surgery. Bless your heart.

Jackbirdie

Sue- I'm very very sorry for the news. But very proud of the fact you didn't stick your head in the sand. You have the right attitude to do this. We will help.

And I love that you looked up sandwich charms. Lmfao. Ladies, this is our life. Let's make the most of it. Thank goodness we are all intelligent, beautiful, and with good. No. Great senses of humor. I literally cannot get through the day without you all.

xoxo and big virtual hugs being strewn to the corners of the earth for all of you.

Jackbirdie

thanks Trvler. It was the lowest point of my life. Then I got a really bad case of bronchitis. For weeks every time I spasmodically coughed the pain ripped through my torso and nerve pain coursed up and down my body. I wanted to die.

SueH58

I suppose I need to move to the May board, since I'm just starting my chemo. I would be honored to be able to stay here with you. I so feel I know each and every one of you. You're all such special people!!!

eheinrich

Back from my never-ending day in the spa. Saw my doc first. My blood counts were low - borderline for going ahead w/ chemo even tho I did the Neupogen shots. We went ahead anyway. At some point early in the taxotere delivery I developed an "adverse reaction" - a phrase which here means I suddenly felt like my chest was really heavy, I felt like I couldn't breathe, then I got very woozy, then as I yelled for someone to help me I felt like I was on fire. My nurse said I was completely bright red. They gave me more steroids. Stopped everything for a bit and then started again verrrrrrrrrry slow drops. I was fine after that (except shaken up). But the tx took so much longer. I was by myself and very hungry. Note to self: pack more food. My husband feels terrible - he is out of town for work (lucky - he's in Chicago & is having dinner w/ our oldest tonight & tomorrow) - for not being there with me. It was a scary 15 minutes but then on ya go, right?

I'm having a sandwich and then a nap.

hugs

~e

eheinrich

Sue, we won't tell on you to the May people if you want to hang out with us too! You are always welcome.

DavisD

This pic doesn't really do it justice but you get the idea...oww!

I'm going to respond to these wonderful posts a few at a time. Just got home from first day back to work after 2nd round and I'm beat. I also have a strange new SE the MO says is from the Taxotere. Both hands on the skin  between pointer finger and thumb, feels like the worst sunburn ever and kind of like the skin has been stretched beyond its capacity. Had labs and saw the MO today and he recognized the redness right away and swore it was the Taxotere. He's going to reduce the dosage....does that mean I was doubly poisoned??? It hurts and hurts to type so it may take awhile to get through this thread. You all have been busy!

Theresa-you are one tough lady though I think you got more than your share with the bike incident. I hope you don't react to it and definitely be proud of what you did accomplish, we are!

Maryellen-Thanks for the sweet words about my dad. That pic always makes me emotional. I'd love to meet up some time. I think I looked up Newtown and it was almost 4 hrs but that's not too bad in the scheme of things. I am glad we all have this gathering to look forward to and I love the name suggestion. My vote is yes! great pic of you and your BFF!

Eheinrich-You know exactly what it was like to lose someone so quickly, hugs back to you. Enjoy your bath I think I may try that too. Besides the weird thing with the skin on both hands, my skin itches every where.

Katy-I ordered four additional scarves and the fed ex guy just left the box in the yard which is an invitiation for my dogs to take it and run.. we got it from the before they were damaged but I was ready to scream when I got home and saw that mangled Amazon box, ha! I listened to my new Pandora station today  thanks so much for sharing good music.

 

IndyGal35

Diane, I got the exact same rash in the exact same spot after chemo #2! It started around day # 6 post-chemo. The area blistered up like a bad burn, and it was sooo sore. The MO gave me 20 mg of prednisone to take twice a day for 5 days, and that really helped to clear up the inflammation and burning. See if your MO will call some in for you. The skin is starting to peel now, but no amount of lotion seems to make the skin softer. The MO thinks it is related to Taxotere too. Yuck. Taxotere is some nasty stuff.

DavisD

Arlene-loved the visual of luring your dog away with chicken, ha! He sounds like a sweetheart and not everyone understands my two shelter mutts either. About your daughter, words escape me except I am so very sorry. I can only imagine the strength it must take to live fully. I always thought the only thing that would keep me going if something happened to one of my children would be the other child. Much love and a warm hug to you

DavisD

Thanks IndyGal! I knew someone would recognize it. I have some prednisone but I'm afraid to take it before bed. I'm really hurting though. Feels like I took a hot pan our of the oven with my bare hands...you know though. thank you again. It's reassuring someone else has experienced this. I always wonder "is this the chemo or the Sjogren's?"

IndyGal35

Yep! I had that exact same sensation, and it just kept spreading until I started the steroid.

I found that taking the prednisone at 9:00 AM and 4:00 PM worked really well. Anything after 4 or 5 started to disrupt my sleep. If you're worried about trying it too late, I wonder if some OTC hydrocortisone cream may help give you relief tonight. That should at least help to take the sting out until morning. My pain and rash was already better after two pills, so I'm hoping you will be feeling a lot better by Thursday morning.

Italychick

my sunshine, my recommendations once you start chemo are:

Ice everything. I think it helps. Feet, hands, mouth. I also do cold Epsom salt foot soaks. The way I had it explained to me is the chemo goes into feet and hands because of gravity. Warm Epsom salt baths also helped me.

The anti nausea meds they put in your chemo bag are key. I get Aloxi and emend and I don't have to take any additional anti nausea meds. Be brutal and ask what they are putting in there. Also, Bekah got a patch for anti nausea. I took two anti nausea pills after round 1 because I was worried about post chemo nausea and what they did to me was blow up my digestive tract and cause constipation. Burping, gas, bloating. Second time, chemo nurse said we give you enough for two days so you shouldn't need anything for two days, but I think the cocktail in the IV matters.

At the first sign of itching or anything funny, alert everybody. I had to have Benadryl added because I started itching. With Benadryl, no issues.

Stay on your mouth. Get Biotene mouthwash, spray and toothpaste. I also rub coconut oil on gums and tongue. And do mouth rinses with 1 tsp each of baking soda and salt in lukewarm water as much as You can.

Eat something small every couple hours, even if it is just a couple of bites of banana. It helps keep the nausea away.

I also keep crackers by the bed in case for the morning.

They will go over everything with you but I have found the above list to be extremely helpful.

Do any exercise you can, even if it is just walking around the block. It gets the lymphatic system moving.

Not sure if the list is comprehensive, but these things have worked for me. I am sure others will chime in.

I have found chemo to be a pain more than painful, still doing everything normal. But I have round 3 tomorrow, so very apprehensive.