Starting Chemo January 2015

Cherylfg

I've tried lemon, Gatorade, Crystal Light mixes, everything tastes bitter to me. Fizzy drinks, like gingerail or Sprite, hurt my tongue and make my stomach hurt. I've even tried bottled water and it also leaves a metallic taste in my mouth.

I really like lemon aid, so I'll try that next.

I'm still focusing on the positive, which isn't always easy, but I think it has helped me get through everything.

Cheryl

Brandi999

Tennisfan that is freaky and definitely putting perspective into this.

In order for me to cope well with all of this, I can't watch anything about cancer, no TV shows, no books about it, nothing. I totally focus on everything else in my life. Last week I couldn't do my Taxol treatment because because my neutrophil count was 1.4. This week I went in to get treatment and my neutriphil count was 1.1!! They gave me a neupogen shot and sent me home. I came back today and was in the clear for treatment. I decided to actually remain conscious during the treatment and colored in my coloring book. It wasn't too bad. Maybe I'm getting over the psychological part of chemo.

SweetHope

Cheryl, You really have been hit hard by this. If you liked the taste of ginger ale please heat it up to dissipate the bubbles. "Flat" ginger ale tastes sweeter than fizzy, and hopefully, it will be gentle on your stomach.

Marjo, I think I told my story about the spilled Adriamycin before...I can't remember. So I'll tell it again. The pharmacist was preparing my adriamycin and spilled it. My chemo nurse said there would be a delay because he had to clean it up...and she said it was a BIG deal. That is all she said, but the look on her face made me feel like the room was going to be evacuated soon! Scary stuff, huh? Let's just put a good spin on it and remember it is just made from dirt and what's more common and harmless than that?

Brandi, the documentary was fascinating and told the history of cancer research. It was intermingled with human stories that were very hard to watch. I'm glad you didn't see it. It ended with a segment on immunotherapy being so successful for kidney cancer and melanomas. So the ending was hopeful but not pertinent to BC.

I'm glad your perkier and chemo went well.

Do any of us get over the psychological part of chemo? I have to really work at accepting these treatments, and when I do, I feel very calm and almost glad. Then, unexpectedly, and usually when I'm not feeling the worst of the SE's, but dwelling on some future, unknown complication (that may never happen) I'll have a setback and become so confused about what I am doing to myself. Hate that. I think a coloring book is just what I might need, too.

PMR53

Good Morning!

Cheryl I struggle with finding something to drink too. I put fruit like lemons or watermelon in water because it tastes so metallic. I drink Paul Newman lemonade or Gatorade. My last chemo was Mar 16 so it's getting better. Anything spicy makes me sick. I was craving pizza! I do not want those 18 lbs back though.

Brandi and Marjo. I watched the PBS special for a few minutes but it made me so sad. I can't watch it for same reasons as you.

I am goIng to see Surgical Oncoligist in an hour. Wanting to get MX scheduled but so scared too.

Thank you all for being here. I don't know what I would do without you!

Patty

Noor46

Sweethope, here the photo of me and one of my favorite horses

SweetHope

Noor, Thank you so much for posting that picture. Both you and your horse are beautiful. But what is that you two look stuck in?

Patty, I am wishing you a positive, strong, healthy calmness as you face today. Just carry all of us in your heart and draw on our love and our care of you.

thecolorpurple

Hi Ladies,

Congrats on all that have completed AC! Have we all now entered the Taxol portion?

I want to express some hopeful stuff to those moving forward into taxol. My experience after getting 2doses of taxol has been like night and day compared to the AC. On the AC I had a day or two where I truly wanted to die, not actively suicidal, but lord please just take me kind of moments, some of the loneliest most painful days of my life, and I have so much support and a normally super strong, positive attitude! This really threw me but that stuff got me down about as low as I had ever been.

Now on the taxol, I have virtually no side effects. My taste is back and like Marjo and others, I am ravenous! Today I am going back to healthy moderate eating as my weight has reached it's all time high since pregnancy 12years ago. Have to reign this in and get healthy.

Anyway, I have no signs of neuropathy - I feel the icing of hands and feet during infusion along with b1, b6, b12 and 30 gm glutamine are doing their jobs in that regard. Anyone who wants more info on any of these preventative efforts please let me know I have done a lot of research and being in the med field and about to graduate from NP school I know how to determine if a study is valid or not.

Hopefully you got from one of my way too long messages that progressive exercise and even weight lifting is GOOD for lymphadema prevention and management. Read a great study from the New England journal of medicine and others verifying this, so I don't intend to baby my right arm anymore.

I hope you all have much fewer SE from taxol as I have had so far. I think getting the doses weekly is much better than getting bombed every three weeks in terms of minimizing side effects, from what I have read.

Sorry if I pushed too hard on the cancer documentary. I think because of my medical/nursing background this whole experience is freakishly fascinating to me. I have always been known for my compassion for my patients but now I have a whole new level of empathy and understanding and a desire to be present with my patients suffering from chronic pain, chronic illnesses and the emotional and spiritual pain these bring forth in a person.

I wish you all a peaceful day with manageable side effects and know you are loved by all of us on the journey with you. Vegas in the fall, discussion soon?

Love Kristin

Ps Jim is doing well twice daily lovenox/ fractionated heparinshots. He gets stitches out today. Another ultrasound in a week. He is working, hanging tough and complains minimally of pain, just takes the occasional Tylenol.

loriekg

Hi Kristin…I'm also taking glutamine and B6 to ward off the neuropathy. The l-glutamine I use is from GNC and is the powder form. Is that what you use? Just wondering if there is something "better/stronger" or is it all the same?

Patty—how did your appointment go? I have my consult next week with breast surgeon. Have you decided on if you'll be doing reconstruction and what kind? I'm scared about all that too…but MAYBE after what we've been through already…it won't be as bad. At least when you're recovering, you'll be constantly getting better. Not like now, get better for a few weeks then BAM get knocked down all over again.

Jena—I'm undecided about the type of reconstruction also, even tho I'm not sure what procedure I might even be a good candidate for. I hope at my consultation I will just be told which procedure would give me the best results so I won't have to weigh the pros and cons so much. Some days I wonder about reconstruction at all.

U4iachic

You are all so great! Thank you for the responses. I had my last round yesterday and follow up in 5 weeks with onco. He know about the pain and didn't seem too concerned and said we will see if it abates by the next visit. I sure hope so. I have been really weepy. I cried a lot today and yesterday.

I have to tell you all, my 2 positive nodes are throwing me a bit. He also told me that I had IDC and small amount of ILC. Which he said changes nothing. I just don't even know what to think. I thought I was only IDC. Can any of you offer some words of encouragement? With my hormones being shut off are these feelings of being sad and over whelmed normal. The nodes scaring me. Just any thought are welcome. Thank you!

thecolorpurple

hi Lori I use body fortress 100% pure glutamine powder. .$10.49 on amazon. It comes 5 gm per tsp and a take 10 gm three times daily. If I forget I double up later.

Like you, Lori, I sometimes wonder if I want reconstruction.... I guess we have time to decide. I just think about reconstruction on fragile skin from a radiated chest wall, complications, infection, etc. starts making the Foobs look good. Well we will figure it out in time.

Take care,

Kristin

thecolorpurple

u4iachic,

I too worry about the positive nodes. Do you know if you just had a few cancer cells in each nodes or a large amount? My first node had a lot and the second node fewer. Your biopsy results should tell you that and your doctor should help you figure that out. We are both stage 2 b and our prognosis is very good after chemo, my OD tells me. Will you get radiation to your arm pit and chest?

Being weepy is totally normal. We have all had our moments and we all understand, care and are here for you. This is all a lot to absorb. Thinking of you,

Kristin

loriekg

U4iachic—well, I certainly HOPE feeling sad and overwhelmed is normal, and if not…at least you are not alone!! I used to cry easily especially if I was watching a show where someone else was crying. Notice I said "watching a show". Now I don't even have to be watching…I can turn the channel and if there is somebody crying—well, that's it. OK, now THAT's weird?! LOL

U4iachic

Thank you for replying. I had 4 mm in one node and 2 mm in the other. I do get rads to the wall and armpit as well. I start in about 4 weeks. Any muscle pains with your chemo? Thank you all

SweetHope

U4, Oh yes I had horrific bone pain and just touching my skin hurt. I took Claritin starting the day before each Neulasta shot, but by chemo #4 it was not helping at all. I still have residual pains which I hope are gone by next Monday's chemo. (For next Neulasta with Taxol, I am planning on taking Zyrtec).

U4iachic

Thank you for sharing. It slowly did get worse during treatment. It stayed through 3 and now I'm just a day into 4.....and last one!

mysunshine48

How do you use the ice packs for your fingernails and toenails? What I mean is, do you take a cooler with ice packs? And, I would think you would have to take many as they melt when chemo lasts for hours. Do your nails turn brown and awful with all chemo medicines, or, are there specific ones that cause that SE? I have not started chemo yet, but am wondering if they have a freezer at the chemo place where you could keep changing out ice packs. Geezzz, there is so much to think about. I have been making a shopping list of things to buy and it keeps getting longer. I just want to fast forward to 2016!

loriekg

mysunshine48--I bought a few bags of frozen peas, didn't need a cooler--just dropped them off in the freezer. The first time I brought 4 bags because I thought I would have to rotate them to keep them from melting, but actually I just needed mine for the Taxotere part of the infusion which only lasted about 30 minutes. (It may have been longer the first time, but not long enough to worry about melting.) Your chemo place will most likely have a refrigerator for people to leave drinks and snacks.

My nails have not started to turn colors or "lift", but I have noticed that they were a bit sensitive after round #4. (And I did bang one against the wall and it hurt--but I don't know if it hurt more than it normally would have! LOL) I have kept them short and polished with Opi Nail Envy and I think that has helped keep them strong.

I hear ya on the 2016!! --Lorie

thecolorpurple

hi my sunshinee

I use gel packs, take them out of the freezer at home, pile them in my small cooler, they are flexible even when frozen so I smoosh them in the cooler. I wait until they start the taxol, get out the beach towels, bury my hands and nails in one gel pack, rest my feet on another and place another on top of the toenails. I have two med sized ones and two large ones. They stay cold for the hour the taxol infuses. I like how flexible they are and I can move the gel around to avoid them getting too thawed out. I have to pull out my hands and feet when they get numb but then put them back in. The overall effect is construction of those vessels and little capillaries while the high dose neuropathic agent is going in. I really believe it works. I am banking on the icing and the supplements preventing the neuropathy. It's good to think we have some control over something here, even if we do get weird looks at the chemo center!

jlstacey

hi Mysunshine. Go to page 35 of this thread and scroll until you see pictures. There is a post there with a description of making gel packs and fleece envelopes for them

PMR53

JlStacy- PFC does mean post final chemo. I finished March 16. Although I have Herceptin every 3 weeks until December. Because I am triple positive I got a different chemo cocktail then those of you on Taxol and AC. I still have neuropathy and everything tastes weird. Body aches and fatigue. Nausea is gone.

LorieK.- I went for preop. It scared me because it sounds like you can't use the arm for weeks. Cooking , driving even showering will be a problem. I am doing MX with Tissue expander right side only. I see plastic surgeon on Monday. I pretty much was overwhelmed, stopped by Macy's on way home (bad idea) was horrified by the bald, crying lady with port that was staring at me in the mirror. Oh and I had to write a letter of resignation from my job of 18 years. With Surgery, tissue expansion it would be months before I could go back. At this point I don't even want to. Yesterday is over Thank goodness. I try to tell myself everyday has a sunrise and a sunset. Today is a new day. Yesterday is over. It was a hard day.

To all of you. I wish you a good day. A day to rest, a day to hydrate and a day to be able to eat something. A "Good" Friday. Thank you for being here

Xoxo Patty

jlstacey

We have to share and celebrate the good stuff right? So while I'm drinking down my second L- Glutamine juice of the day, I'll tell you about my good day. My husband and I met some friends at the Detrout Zoo with our kids for the Easter event there. Our zoo is very spread out and I was a little worried about walking that much because I have not been walking during this. I felt great! Still not tired now! I've folded laundry, boiled eggs to dye and we are going out to dinner for pizza which I won't even taste. Oh well.

I had chemo yesterday and it seems I'm just going to have to deal with the restless leg during infusion. They halved my Benedryl dose but I still had it. I think it is better if my legs are not elevated so I just won't recline during that part.

PMR53- I know you must be very down right now. Everyone says surgery is generally much easier than chemo, so try to keep that in your head. Have you ever had surgery? Do you know how you do? The two short surgeries I've had I recovered from very easily. Port surgery was a breeze, so I try to remember that when thinking of upcoming surgery. I have gone through periods of this journey where I just get really low. I find I have to make a very conscious effort to think positively. In the mirning, before I even get out of bed I give my self a pep talk and it does help me to start my day with positive thinking. I hope you can find something to help you get through your apprehension about surgery.

My kids have spring break next week. I have decided to take them to my hometown of Induanapolis next week to see family and friends. My 90 year old grandma has had some health issues so I need to get down there. I feel very adventurous doing this without my husband right now, but how I did today makes me feel better. There's no way I would have done this a few days after an AC infusion!

Have a great day everyone!

Jena

stillstruggling

Hello Ladies.

PMR. Please don't worry too much about the MX. I had my left breast removed in December. The plastic surgeon took part of my latissimus dorsi muscle and moved it to my chest. I have expanders in now which are uncomfortable. As with any surgery for the first few days it is hard to move around but your mobility comes back pretty quickly. Your range of motion may be limited but again that comes back with time. I took pain medicine as directed every 8 hours. The worst part for me was the drains. You will have these little plastic tubes that hang out of your side that collect blood and liquid. Someone will have to remove the collected fluid from them. They don't hurt they're just creepy. For me, surgery was much better than chemotherapy. I would ask for Mirilax in the hospital to help with constipation which was my biggest issue. Some suggestions for the hospital are: take a big, warm fluffy robe, slip-on shoes, and some comfy clothes like sweat pants and a over-sized button up the front shirt. You don't want to lift up your arms to put a shirt on.

I went to work today for the first time in three weeks. It was nice. Monday is my 5th infusion. I dread it.

loriekg

Patty! So sorry that you had such a rough time!! This is daunting and overwhelming, scary too. At least you will have the use of your left arm. Did they tell you to try and strengthen your core muscles to make it easier after surgery? Last year I had a hip resurfaced (which is pretty much like a total hip replacement) and luckily kept some of my "aids"—like the shower bench. DH wanted to throw it away but I said no, box it up and keep it! I'm glad now. Also, I have a foam bed wedge "system" I'd recommend if you don't want to sleep in a recliner. Here is a link on amazon: http://www.amazon.com/gp/product/B000CA5AG2/ref=oh_aui_detailpage_o03_s00?ie=UTF8&psc=1

Stillstruggling—when you were talking about the drains, do you really have to have someone to empty them? Yes, I am creeped out by the thought…but don't really want to ask someone else to do it either. Eeek.

Jena—have fun in Indianapolis next week! Yes, I love to hear the good stuff! So glad to hear your able to be active and enjoy the zoo and spring break!

stillstruggling

Lorie--yes I had my husband "empty" them. I never tried to empty them myself, but I think it would be hard for the person with the drains to do it because after surgery your range of motion is limited and given placement of the drains, mine were on my side, you would have to twist and bring your arm over to the other side to do it. You have to get the fluids out of the drain by taking this little plastic clip and running it down the plastic tube. You have to collect the liquid, measure the liquid that comes out of each drain, and keep track of each drain's liquid measurement each time you "drain'" them. These liquid measurements lets the surgeon know when he can remove the drains from you. There are a lot of things to do with the drains for a person who just had surgery and is going to be on pain medication for a little while. My drains were able to be removed at my second follow-up with the surgeon. I thought it would hurt when they were removed but it didn't. It felt squishy but not painful; I didn't even know they had been removed until the doctor told me. I hope this helps.

loriekg

Yikes...guess I better start being nicer to him.

Tennisfan

Two more questions Kristin - do you take a B50 or B100 complex or is it best to buy all thr B vitamins separately as they are dtronger? Also is the powder better than just capsules/pills for the L-glutamine

Merci!

Marjo

Tennisfan

p.s. I would take surgery over chemo by a mile. I know some surgeons make you measure fluid, but mine did not. I took care of my own drains no problem and was quite mobile after 7-10 days. One trick my BRCA2 cousin gave me was to wear yoga pants and to just put the drains on each side of my pants so they stayed nicely in place. My baby sister will do preventative DMX as she carries the gene too and after seeing how it went for me she had no hesitation from a pain/complexity perspective. I did not take any pills past the first night. The hardest part is to learn to sleep on your back! My neck got so, so sore... I would recommend reconstruction to anyone. This being said I did not have a flap.

PMR53

Jlstacey

So glad you got to go to the zoo and you could do all that walking and celebrate Easter Traditions too. I appreciate your support. I had a total Hyster in 2011 for Endometriosis. I am thinking a MX can't be worse. Enjoy Spring Break!!

Still Struggling: hopefully I can empty the drains myself as I will have the use of my left hand/arm. I am somewhat familiar with them from working at the hospital, but will be different because they will be hooked to me!! Thanks for the advice on the robe and button up shirt. I am starting a list to take for surgery. Hands down everyone says Surgery better than Chemo. I think Loriekg said at least with surgery you can look forward to getting better. Prayers for your 5th infusion Monday. How many will you have??

Loriekg. Thank you for your support. What is this sleeping in the recliner business? Haven't heard this one before. Must have something to do with circulation/healing. When is your surgery?? What did you decide on? I did see SO and will get R MX with reconstruction TE. No flap surgery. There is a link for surgery sisters and the month you have it. I don't have date yet.

Tennisfan I take a B complex that has everything it. One capsule a day. The brand name is Thorne. Basic B complex. My ND recommended it. I think you can get it off Amazon. Good idea for wearing yoga pants to hold drain. I will see Plastic Surgeon on Monday but think TE is the way I am going.

Colorpurple. Who cares what looks you get. We all have to lookout for whatever SE we can bypass. Icing really works. Keep at it! I did what you did with towel, peas and cooler.

It seems like all of you getting the AC combo are done with Adriamyacin and are doing better on Taxol. I had Taxotere which is same family. I had 4 doses and with bags of frozen peas on toes and fingers for 1 hour during Taxotere infusion I managed to escape awful nail SE. It's still early though. I do have neuropathy in my left heel though. Finger neuropathy occasionally.

Happy Easter. God Bless you all!

Patty/PMR53

PMR53

Hey All I changed my picture to some Spring Flowers growing in spite of the Snow. This symbolizes all of us!!

PMR53.

thecolorpurple

hey Marjo!

I take b1, b6, and b12 separately and the glutamine comes in powder form, 5 gm per tsp and you take 2 tsp three times daily to get your 30 gm daily. I bought all supplements on amazon. They were reasonable.

K