Chemo June 2010

Bon - so sorry your mom is having such a hard time.  She will be in my thoughts and prayers until you tell us she has recovered from this nasty salmonella thing.

T-Marina - I just finished my 8th weekly Taxol treatment and I have not experienced any bone or joint pain, nor any neuropathy or problems with my nails.  I think the dose dense regimen is more likely to produce those SE's because you are probably getting a higher dose of Taxol at your treatment.

DesignerMom - loved the dream.  I saw that thread when I first logged on here today and was going to visit it, but first wanted to check in with all my "buds."

sorry for the unknown which comes on Monday Sherry,  but perhaps  (and hopefully)  you'll do fine with it.    I'd have ice cream too though - good idea  

mimi,  I am so sorry for the severe side effects!   I am so glad your daughter was there for you and got you some help.   I hope they can turn things around for you!!

Hi Northern Girl,

I am not on any pain meds and about to attempt the gym! I am a bit of a fitness nut. I have no SE so far and I continue to pray I do not. I had my first infusion of Docetaxol infusion on Tuesday at 1500hrs and I have 2 more Docetaxol treatments left to go. I had 3 FEC treatments first. I have found the Docetaxol better thus far. You will be fine. I think the uncontrolled pain was at the root of all your problems. You were starting to sound different in your posts.  A friend of mine told me something after the death of her 14 year old daughter and that was she knew at the time she could never let her self get down there because if she did she may never get back up. Remember that cause things could always be worse. Our kids could have cancer and that would be much worse. Keep yourself standing and do not let anxiety and depression become your pathway. I can sense you are strong and will continue to stand and not get down there. Just do not let yourself! It can become a hard cycle to break if you do. How is the Gabapentin working? You are sounding a little more positive .

Take care, 

Trustiing

sherry-Dang!  Like Roseanna Danna says "it's always something!"  and you have had more than your share of somethings!  You will make it, even with the extra treatments. Hang in there!

mimi- You definitely need to get your doctors to re-evaluate everything.  I think your decision to get some face-to-face attention is wise.  They may not realize how sick you really are from SE.  Most SE should be treatable.  No reason for you to be this miserable.  Something I have found very handy.  If you can get your doctor's e-mail (they should be willing) I have found they respond to questions much more quickly than leaving phone messages etc...I think it is because most of them have Blackberries. I would definitely ask, can't hurt.

vicky thomas- Life just isn't fair. I would LOVE to lose weight and you are trying to GAIN it.  As someone who has always had to watch my weight, I am pretty conscious of what I eat.   One pound of body fat = 3500 calories.  So if you want to gain 1 pound a week, you need to increase your calories by 3500 calories/week or 500 calories a day.  Two bowls of ice cream a day should do that!   Steady, consistent increase in your calories somehow will work.   I certainly don't mean to make light of this, I know it is probably just as hard for you to gain weight as it is for me to lose it.  Best of luck!

Oh Kaycee, I am so sorry about you being stuck in hospital.  I am glad they found the infection and can now treat it but having surgery again!  You have taught me a new word.  Major suckage! How appropriate for some of us.  I will be thinking of you tomorrow.  Will they replace the port?

Thank you all for letting me vent and get the anger and upset out.  I am off to pray for all of my new best friends.

Love and Hugs, Mimi

I had my first of 12 weekly taxol/herceptin treatments today and it took 6 hours. They gave me all the pre-meds and then did both infusions very slowly to make sure I did not have a bad reaction. Happy to say that it went well but I am up this morning 3AM due to gas pains and a bit of diarrhea.  Just took an Ativan - hope it helps me go back to sleep. The nurse said that the rest of my treatments will only take about 2 hours start to finish. Thank goodness  during that last hour today,I felt like the Taxol bag was endless - actually started to watch the drip...drip...drip. Like waiting for water to boil. I feel for you girls who have treatments that are that long all the time. 

mitymuffin -

My doctor also told me today that I would need a transfusion on Saturday due to a low rbc that I have had for awhile and is not getting any better. He explained that it takes a long time for the body to replace red blood cells and he feels that we have waited long enough. The transfusion will take about 6 hours but he said I will feel like a new woman when I leave. My count was 8 and it should be at least a 10.  Good luck to you. I hope yours recovers on its own.

Sherry - I also treat myself every day to some vanilla ice cream with homemade chocolate sauce.  

Bon- I will add your mom to my prayer list. It must be so frightening for you all especially due to her age.

Kaycee and Mimi - I hope you are feeling better soon. I had to have my port replaced but not due to an infection - it was defective and split open. My new one has been working fine.

Hugs to all - hang in there - we can do this! 

Oh, ladies, this seems like such a bad week for everyone. I'm so terrible sorry for all each of you is going through. This cancer is so dreadful and all the ups and downs of the diagnoses and Chemo SEs and delays and setbacks...it's enough to drive any sane person right around the bend.

I do not mean to monopolize this board with my personal issues but am so distressed over my Mom's condition that I am a mess this morning. She is starting to verbalize that she may not make it through this. The are preparing to give her a much needed transfusion today and still fighting the Salmonella and high potassium, but without much success. At least I am consoled by the knowledge that now she is getting the attention of the very 3 docs who sat on this for weeks and didn't want to take the responsibility for admitting her before the wee hours of yesterday morning. The nurses are solicitous and my step-Dad and a friend will be with her today since I am unable to help.  My Chemo was 2 days ago and Nuelasta yesterday so am in wobbles-mode and not much good for anyone, including myself today.

Have decided that cancer does not warrant a capital "c" in my book. It is sneaky and nasty and lowly. Have elevated Chemo to capital status since it is trying to help me eradicate the cancer and stomp it into the ground like the snake it is. Chemo reigns, SEs and all. I think cancer should have it's own even lower sub-case, almost so small as to make it disappear. I hate cancer and all that it brings. Except, perhaps, my association with all of you. This board is the best thing to come out of my cancer diagnosis so far. I'm waiting until the day I am placed in the 'NED'  (no evidence of disease) category to change your collective status to #2.

If you are so inclined, please keep praying for my Mom. My prayers are with her and with all of you, too. We are fighters, warriors, and we will triumph, in body and spirit. I have to believe that. We have to believe that.

JFV, Joan...I'm so happy for your good news. Hope that relieves some of your worry and you can now get your Vit. D levels under control. I live by the words of my patron saint, Rosanne Rosannadanna..."It's always something. If it's not one thing, it's another". 

Hope good news continues to pour in for all of us this weekend.,  Bon

Bon-I'm glad your mom is finally getting the care she needs. Prayers going up on a regular basis for "MamaBon".  I pray she gets back to her home and continues on her long, loving journey in this world.  It must be hard, but try to rest and get your strength back.  OHH!  My friend just sent me the Roseannadanna get well card from Hallmark!  You open it and Gilda starts talking!  Had me LOL!

cebsmom-   Did you call the Oncotype people to discuss your report (their phone is on the report).  They are very helpful and thorough explaining things.  If I am not mistaken, they test thing repeatedly (maybe 3 times) for accuracy  As it really makes a difference in your treatment plan, I would ask for a second opinion on your pathology.  I think they have to keep your tissue "on file".  A friend of mine actually got her pathology slides and sent them to one of her best friends (a well respected pathologist).  There has been MUCH talk about pathologists not reading tissue accurately  even one woman who was read positive for cancer and she was negative (after a mastectomy!)  Pathology has a lot of room for human error.  You need, and deserve to feel TOTALLY confident in your path report before proceeding with your treatments.  Good luck!

JFV-  Good for you that you LOST weight.  I actually gained a few pounds (too hot to exercise and chemo fatigue).  As there is much talk about  anti-cancer diets to help our outcomes, this could be a great opportunity to look into that way of eating.  My husband and I went on the Sonoma Diet years ago (it really is not a diet as much as the Meditteranean way of eating).  We each lost about 35 pounds and have easily kept it off.  He got off BP and cholesterol meds, totally normal now.  We genuinely don't miss the sugar, white flower, white rice, butter etc. (all things we should reduce or eliminate). The recipes are fantastic and we have never eaten better!  I even serve them to company and they rave about them.

It seems a lot of you are monitoring your Vitamin D levels.  My Onc hasn't mentioned this, but I know it's important.  Are all of yours being monitored?

Sorry for all the yucky SE and emotional upheavals!  Hang in there, things will shift and improve!

Joan--Thank you for sharing your good news!  As for the weight, since I've been done with the AC the weight seems to be coming back on quickly!  Although I am retaining water too, so that might be part of it.  I haven't had any nausea with the Taxol, so I'm able to eat--time to start watching it I guess!  My plan is to start by increasing fruits and veggies.  Also, cut back on processed foods, and don't eat out so often.  A personal trainer that is on a local news program suggests starting a weight loss program by eating more frequent, smaller meals.  He says that if you only change one thing, to do that.  Eating more frequently helps keep your metabolism up, which burns calories.  He said to never let yourself get really hungry, or really full.  Both slow down your metabolism.

I've been having a lot of pain still from Taxol.  Ibuprofen doesn't touch it, so I've been taking percocet.  This morning I felt pretty good, and didn't need any pain meds, but by early afternoon it was really bad.  I took 1 percocet, then an hour later took another half of one.  I feel pretty good now, just a little achy.  I have to say that overall this chemo is MUCH better than the AC, or even the FOLFOX I had last year.  I have no nausea, and only 1 day where I felt tired all day (so far anyway).  I'm hoping the pain goes away soon, and I have some good days before the next round!

Sherry ~ I had my first Neulasta shot a week ago this past Wednesday and I did take the Claritin the morning of my injection.  I had some bone pain (mostly my hips and thighs) but it was tolerable with the use of Tylenol.  I did have stronger pain meds on standby if I needed them.  A friend of mine had the same shot without the Claritin and had horrible side effects, ie bone pain, skin sensitivity, etc.  So, I don't know if the Claritin was the reason I had fewer side effects, or the nausea I was experiencing overpowered the bone pain, but I do know that I am planning on taking it again when I get my next injection of Neulasta.   I'm not sure about the Neupogen.

Bon ~ My prayers are with you and your mother.

VickyThomas ~ Have you tried 'snacking' on high protein foods (like peanut butter), throughout the day to get some extra calories?  There is also a product called "Magic Cup", it's like a single serving cup of ice cream  (I think it's available as an ice cream or pudding), but is loaded with calories, vitamins & protein.  They taste decent and are easy to eat, even with a decreased appetite.  Good luck!  

Kaycee ~ I hope all went well with the removal of your port!  There are so many 'scary bugs' out there, and chemo makes it even tougher to fight them off!  I'm glad they found out what was wrong though, and that you are on the road to recovery from this infection.

Ladies we are doing this!!!!  Sometimes my life feels so surreal and that I'm watching from a distance as my body goes through this disease with the surgery, chemotherapy,  radiation up ahead....I feel so weak at times, but WOW when I get through this I am going to shout to the mountain tops!!!   I don't feel so alone because of all of you here on these discussion boards, and I am so grateful that we have each other.  For that I say "Thank you".

God Bless ~ Jan

cebsmom - Don't know if I ever connected with you before or not. Don't remember (chemo brain!), but I had a very similar situation as you. My original biopsy was 50% ER+. It was done at a local medical center. I then found a breast surgeon at Sloan Kettering since I live in NY and was more comfortable going to the "experts". They reviewed my biopsy reports and the surgeon recommended a lumpectomy. Got the lumpectomy, no nodes involved, clear margins. Went back for the follow up after the lumpectomy and the surgeon is reading off my pathology report on the tumor she removed and says; "ER -. PR-, HER2 -" and I yell: "WHAT? WHAT DID YOU JUST SAY?" She didn't even realize it differed from the original biopsy.

At that point I got slides from my original biopsy and Sloan redid the staining. They also redid the pathology on the tumor and they sent my slides for the Oncotype test. They got 20% ER+ on the original biopsy and ER- on the tumor again. Oncotype came back 4.4 ER Negative. Has to be 6.5 or higher to be considered positive,  My recurrence score is 47 (32%).

My onc says he considers me "weakly" positive. Says that tumors are not evenly distributed so you can get varying results depending on where a sample is taken and my original biopsy just happened to have the strongest part of the ER receptors in it. I totally get your frustration and roller coaster ride you are on. In the end, the grade has always been grade 3. That is aggressive and must be treated as such. I'm doing dose dense AC (4 rounds) and dose dense Taxol (4 rounds). Three left to go. My husband did ask the surgeon if she had known I was TN prior to the surgery would she still have thought lumpectomy was the way to go. She said yes. Have to believe that at this point or I'll go nuts. My onc says after rads he thinks I should do Tamoxifen and I can always stop if I have a hard time with it. I'm not sure what to do. I feel like if I'm TN then 5 years of that is more drugs I don't need? I probably should have sent you a PM! Sorry to make this so long!! -Donna 

Bon, how is your mom today/

Kaycee, how did the surgery go?

Lizzyanne, how are you feeling today, did the transfusion go well?

Day 9 from the 2nd docetaxol and still cant eat, have vicious diarrhea, incredible pain all over and abdominal swelling.  I am writing out a whole list for the onc to read.  They didn't return my call Friday for a request for a appt.  I will be on the phone again first thing Monday getting demanding.

Hope everyone has a S/E free weekend.

kitty-  I bet you are a type A personality!  If this isn't reason to stop working, WHAT is!!!  Listen to your body, it is beat up and tired and needs to rest.  I can just about guarantee that your co-workers aren't going to take on your duties IF YOU ARE THERE.  I owned retail stores for 22 years.  When I would come into one of my stores and see the clothing racks a mess, I would automatically start to straighten things.....thinking my employees would jump in and offer to do what they were being paid for!  Surprise!  They never did.  Your FIRST and most important job is to GET HEALTHY.  The best way to do that is to let your body rest and recharge during this strenuous, miserable chemo.  As you certainly qualify for disability, I vote for taking the time off of work.  I have a feeling If you don't, you are going to kick yourself later and say "what was I thinking, I could have taken time off, focused on my medical needs, still get paid !"

For all you ladies with low red counts, is it iron-related?  Doesn't iron help?  Dr. Oz suggested cooking in an old fashioned iron skillet.  The iron gets into the food.  Sometimes we forget simple things like that.  I think I'll go sautee some spinach and garlic in olive oil in my skillet.  Popeye look out!