Sept 2012 chemo
Comments
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Jojo: sorry your sitting there today. But sounds like its working so hooray. I have Taxol #2 next Thursday. I also have heard about metformin, usually for diabetics. Have you had many side affects with Taxol?
Butterfly: I had my first taxol a week ago and got slammed with joint pain and numbness in hands and feet. It's getting better now. My doctor told me to get l-glutamine to help with the numbness (neuropathy). You may want to discuss with your onc.
I'm shopping Black Friday today........online! I've never been an online shopper but this year I am! Kinda fun! -
Hi All,
Kids: Wow! Cooking for 20! That's awesome. I a glad you were able to keep up your tradition:-) We went to a friends house, but it was actually great. My kids had other kids to play with, the food was delicous, I didn't clean a thing, and got home just before my SE started super acting up (Just had chemo on Tuesday).
Jojo: Congratulations on more shrinkage!!! My doctor also talked about the trial- but because it is a trial, I wouldn't know if I was actually getting the metformin or be placed on the placebo. I don't want a placebo! Plus metformin causes some weight loss (which at this point in treatment would be a super good perk!) Looks very promising from everything I have read online.
I woke up this morning at 4am- and started putting together Shutterfly books for the extended family for the holiday. Lots of crying seeing the old pictures of me and the family before diagnosis. This has been such a hard five months. Crazy how things can change so quickly.
Was able to get some good deals online. (I don't have it in me to go out in the world for Black Friday!)
Hope everyone is doing well!
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Hopex my only SE on taxol is joint/muscle pain. Although its the only SE, it is significant.
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To all,
At times he is wonderful. This is second marriage. He had a very unhappy first. I had a happy first, but mine had a heart attack and died suddenly.
This morning, I interrupted him while we were chatting in bed before getting up, and he BARKed loud at me. I told him that hurt--and there was long silence. Problem is that he was a Colonel, and no underling would dare interrupt. I thought he was done. I grew up with a mother and sister that if you didn't jump in when the other finished, you would never get in a word. I'm probably pretty bad about it. Anyway, two introverts married each other--me much more than he. We are interested in the same things, and that has helped a lot. Also, I know how lucky I am to have him--so I work at it most of the time.
It's much harder when you are younger--have kids, tight money, two jobs, PTA, scouts, church, yard, etc. Exhaustion sets in. It's hard on both. There's plenty to disagree over. I can only imagine how hard it would be to add cancer and chemo into the package. You have my admiration and prayers.
C.
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I am doing so much online shopping! I just got the kids a telescope I had been eyeing for the last month at about 130 dollars less than what it was originally selling for:-) I bought a green uklulele for my son and Brave for my daughter (blue ray onsale at Overstock). I love no lines or rude people:-) And the deals are pretty good online today! Plus I kind of felt bad for all of those people forced to work on Thanksgiving:-(
Okay- kids are fighting... gotta go!
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I had #4of6 TCH this morning. I can't remember who gave the info that Herceptin should be given first but, a HUGE thank you!! I spent all week on the phone...I have been getting it in the wrong order. The nurse in the chemo suite said they always give Herceptin first, but my order was written for it to be last. The nurses questioned it at the begining and figured it was because I'm on a clinical trial. I called the trial coordinator who said they leave the order of meds up to the Dr. I'm not sure who messed up. They seem to try to downplay the mistake. Ugh! Well, Another example of being our own advocates. My lesson for today is to keep reading and educating myself! But then....
Im at the same point as bearcub...I'd like no reminders of breastcancer...I want to deal with it and move on to the new normal and live life....I don't want to miss a second of it. I breaks my heart to not enjoy every day. I miss participating, I'm getting tired of watching...does that make sense? -
Cindi I am with you, in the 36 years of marriage, we like anyone have had our ups and downs....I think over the years we have just become very comfortable with each other. He loves physics and studying string theory ect. Sorry the subject to me is a snore fest. He spends time in his library(spare room) doing the things he loves. We give each other lots of space, but enjoy many of the same things. I love watching the birds, squirrels, looking at animal tracks in my yard, he does too. In the last 7 years ( I stopped working outside of the home) I have been the traditional wife, cook, cleaner, and have babied him and he loves it...he has worked and chopped the wood...lol. Maybe that is why things are easier, when I worked it was never a day off for me...I just could not do it all. I never knew when to be quiet, that is something we have both learned, is the argument really worth it.....I think we have turned into two old slippers that fit!
JoJo that is great news about the shrinkage.....lets hope it's gone soon. Have you made any firm decisions on type of surgery yet? I am node negative but was super interested in the Metformin study. I have read quite a few women in the Canadian forum starting the trial. I thought it sounds promising.
Butterfly when I was first DX my DH was saying all the wrong things and he really didn't understand what I was thinking or going through. We got a book from the library called Breast Cancer Husband...How to help your wife and yourself through DX, treatment and beyond. It is by Marc Silver. This book made him get it....and he was of a totally different attitude after. He even went out and bought his own copy....We cried and laughed together reading parts....hope this helps!
Happy Weekend to my dear friends....no SE ! -
Hopex3 yes I had a/c first 4 dose dense treatments 2 weeks apart now im on 12 weekly taxol. My mo said she dont play around with neuropathy since it can be irreversible so she cut my taxol dose slightly. I do take b6 though heard that was also good for it.
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Bearcub, no decision yet. I am seeing plastic surgeon on Dec14 to see what options i have for surgery. I have D cups so not sure what the surgery options will be for me.
Asked my MO about a lumpectomy since that was my original goal. She said I am "still on my way to that goal". So at this time, probably not an option. She explained I should envision the beginning tumor like a football. Not in size, but in texture. As we take chemo, it softens the shell and collapses the inside which was filled with cancer cells. So what I have now is like a football with no air and collapsed into a small soft mass.
When it comes to surgery, the entire football must go plus any other attached margins with cancer or what had been cancer.
Leaning towards doing both and getting implants at this time.
On my steroid, zofran, pepcid, benadryl, and DD Taxol high now! -
Met my new surgeon today. He was great!! He agreed to do the BMx!! And he agreed NOT to do the immediate reconstruction. I am so glad. My original surgeon said no to the Bmx and wanted to do immediate reconstruction even though I have to do radiation post surgery and had heard that it can sometimes change the skin. This new surgeon and I seem to be on the same page. Happy, happy, joy, joy!!
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Jojo - it's great that the tumor has shrunk, hopefully you can get the lumpectomy, that was not an option for me.
foreverchanged - That is great that your surgeon is on the same page as you. I met three surgeons, and some were just awful and arrogant.
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Hope everybody had a good Thanksgiving weekend and that SEs were minimal. I guess I don't really qualify for this thread anymore since I finished my chemo 4 weeks ago and am now 3 weeks into rads but I hope you don't mind if I stick around.
Great news on the shrinkage JoJo!
Forever: Happy you found a surgeon you are comfortable with.
On the topic of being comfortable with your Dr I must say I really don't like my MO. He is always in such a rush and his people skills are non existent. Appaling in fact. I think I mentioned a while back that my DH also has a health problem. Well this is what happened. His Dr thought he had a gallbladder problem and as they are running tests and doing imaging they couldnt find anything wrong with the gallbladder. Instead they found this large (fist sized) mass in his pelvis! At this point he was told there is a 50% risk it was sarcoma. He didn't tell me for about 3 weeks. When he finally did I fell apart completely. What are the chances that a 42 yr old get bc and a 46 yr old sarcoma at the same time! How do you tell your kids something like that? DH had to have more tests and a biopsy. Waiting for the results was agony. 2 days before my last chemo we went to see my MO. I started crying when he asked me how I was and told him about our situation. He said he could take a look at the images if we wanted so he did. He came back and said in his opinion it looked like sarcoma. Then he
shook his head, smiled and said "And there I was thinking my life was hard. Thank you guys" then he patted my husband on the knee and said "But you will do well". I was too stunned to reply!
Thankfully the biopsy came back saying the tumor was benign, but it is in a tricky spot and he still needs surgery. We have no date yet and it's adding a lot of stress to our lives. I thought dealing with my diagnosis was difficult on it's own! This is more than I can deal with and I think my MO was completely out of line diagnosing my husband like that and with his comments. I have no trust for him anymore and want to change to another MO but dont know how. I considered complaining about it but dont want to turn him against me when Im in his care. Saw him again last week and told him he was wrong about my husband. He denied having said it was sarcoma. Said he would suggest it was "treated" like a sarcoma. BS. I know what he said. Then he wrote me a prescription for tamoxifen and was out the door. I think he was embarrassed as he should be!
Now we wait for a surgery date, probably not until after Christmas. I carry on with my radiation and try to put the worry out of my mind. He carries on as normal (I don't know how he can). Because of all of this I am now on antidepressants (Effexor) and antianxiety meds (Clonazepam). I pray it will all turn out ok but every morning I wake up and the reality of it all hits me like a ton of bricks. We havent told the
kids yet. I struggle to cope right now. Thanks for listening. -
Neta, so sorry to read of all the stress in your life. Thank god it was benign and hopefully surgery will resolve all. It saddens me to read of so many who do not like their MO's. I love mine and feel so blessed. Please stay Neta with us and share your rad experience! We are all here for many years to post and plan a survivor get together!
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Thank you Jojo. Thankfully my RO is great and hopefully both my treatment and his surgery will be successful. I really have no choice but to beleive that.
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Neta- wow, thank goodness your husbands tests came back saying it wasn't sarcoma. Still pretty sucky that you have to deal with your husband having any health issues at all during the same time that you are going through this.
I am starting to get some anxiety about chemo coming up again. Ugh. I hate gearing up for a chemo. Hate it! The only good thing is that after this one I will only have one left. I feel pretty good but this muscle weakness that was in my legs is getting much worse and then it went to my right arm also, and is now starting in my left arm. Sometimes I seriously wonder if I am going to end up in a wheelchair by the time I am done with chemo. It scares the crap out of me. I can walk okay- but not quickly and I can't bend my legs well at all. If I ever have to bend or kneel down it is excruciating and very hard to get back up.
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Damiana, sucky indeed! I was leaning heavily on him until I found out and now I can't do that anymore. He is very stoic about the whole thing but I am terrified! Just plodding along with my treatment and praying it works and that I recover quickly so I can take care of him after surgery.
Sorry to hear about your chemo anxiety. Try to focus on the fact that it is the second to last treatment. The end of your chemo is not far off now! What is your MO saying about the muscle weakness? -
Neta I am also done chemo but plan on sticking around this thread. I am so sorry to hear about all you have been going through. Your DH must have been in extreme anxiety mode keeping that news to himself for three weeks. Thank goodness the results came back benign. Sorry you are unhappy with your MO, are you basically done with him anyway? Thankfully you are now dealing with your RO and you are happy with him. Is your skin holding out well with rads? Hopefully by summer both you and your DH will have your life back to normal somewhat, and you can have a fantastic summer with the kids.
Damiana you are almost done......hang in girl!!.....
For those facing the big girl chair this week, may you have minimal SE .... -
Bearcub; you are right, I will only see him for follow up now (next time in 2 months). I see my RO every week and she is my primary Dr now. My skin is a bit red now and Ive had a weird pimply rash as well. It doesn't hurt yet but I expect things will get worse from here on. When do you start rads?
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I will find out on the 3rd of Dec, that is when my consult is. I hope they don't wait too long to get me started, as nervous as I feel, I just want it over with. I have bought 3 tubs of Glaxol from Costco, I have used half of 1 moisturizing already. Hope the rest of the way for you is not too bad and you can keep on schedule...
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neta69: So sorry you and your hubby have been facing so much lately! I can't imagine what all your DH was feeling as he was waiting to tell you and at the same time dealing with all that you are going through. And it also sucks that your MO seems to lack in some basic good bedside manner. I am glad that your DH's results came back benign - and hopefully the surgery will be easier than expected and he will recover super quick.
Damiana9: I am slowly falling apart as well- and worry about how much I will fall apart by the end of this too! The muscle, bone, and joint pain is horrible. Plus this stupid neuropathy- even typing hurts. And it all seems to get worse with each cycle. I have two left to go. Sucks.
Spent all day today in the ER with bronchitis. They took some chest x-rays to make sure I didn't have pneumonia. I am feeling so super sick- I can't stand it. I slept all day yesterday - but when I didn't feel any better, I called the oncologist on call and they told me to go in. Not fun at all. Home now, but super sore, congested, and nauseous. They put me on some heavy duty antibiotics, so hopefully I will feel better soon.
Hope everyone else is feeling much better than I do!
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Mariposa: I'm so sorry that you are sick. Gad you are on antibiotics. You should start feeling better soon. Maybe a warm heating pad on your chest may feel good. Drink some hot tea and honey.
I am on taxol now which gave me the horrible joint pain and neuropathy. Almost felt like restless legs. Hate it. Can't even get comfortable in bed. My onc told me to take l-glutamine which supposedly helps with neuropathy. Also, some people have suggested icing your fingers and toes during treatment. I haven't done that. I may try this Thursday. At night, I take two Advil and one Tylenol. That seemed to help a little with bone pain. I have three treatments left of taxol and just keep telling myself, I can do this.
It's so hard. Then I get emotional and well, I'm not telling any of you what you don't know already. It just plain sucks big time! And I hate being bald! Sorry, I guess I needed to rant today.
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Is anyone else on Taxol having huge issues with sever dry sinus to the point of blowing blood? It is painful and not sure how to moisturize it besides saline spray....
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Monday morning, and I'm beginning to emerge from the Taxotere haze. Last one! I did it! In.Your.Face.Cancer! Even though I still don't feel great, knowing that when I start to feel better I'll continue to feel better is such a relief. I had my surgery in early July, first chemo on 10th August--it's been a long haul. Not finished yet, but the hard part is over, I hope. Radiotherapy planning on Thursday and then radiation treatment after Christmas.
Amy, I've had a really sore, dry nose on the Taxotere and have been blowing out blood. I've just been using a bit of vaseline up there and it has helped.
Mariposa, hope you feel better soon. I found the FEC manageable, but the Taxotere is really evil stuff. I only had three and am not sure I could have coped with any more. You are such a warrior. Keep going. You're almost there.
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Good Morning - I hope everyone is doing well.
Mariposa, I really hope the antibiotics help you so that you can feel better soon.
Quick question, has anyone on Taxol had there finger tips go numb and is it permanent? The fingers on my right hand and toes on my right side are all numb. Thankfully, joint pain is starting to subside, but slept most of the day yesterday to get to this point. I have lupus as well, so not sure if it is making the chemo side effects worse or not.
Here's to minimal SE's for all in the BGC this week.
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JodiRocksthePink, in regard to herceptin being received first, you need to reed Mariposal123's post on 11/19.
Cocobean posted something that she heard at a conference but when I told my ocn nurse, she said that there should have been a research study and an outline of the presentation to support this. Cocobean didn't have this and Mariposal123 actually receives treatment at Stanford University where Cocobean heard the talk. Mariposal123 questioned her medical team and was informed that the order of heceptin does not matter. This information is validated by Mariposal123's one on one talk so is the more credible information.
I know that this all very scary for all of us and we all jump at whatever information can help us but I think we need to be diligent about providing information that is substantiated and verified. I was so upset about the order of the herceptin that I wasted time worrying about my treatment and questioning what my doctor and my nurse were doing to me. These people have always been very good to me even when I was falling apart and I am sorry that I questioned their judgement.
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Neta you are a part of this group forever. Remember the 5 year on line reunion. We all must keep up with each other as we are sharing this load.
Your Oncologist sounds like very poor people skills. Hope you find better.
What a tough time, and at the holidays. Well vent here. We will understand.
How is your support network?
Hugs
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Butterfly,
I've had numb finger and toes since about round 10 of weekly Taxol. I just finished round 12 on Friday and the numbness has gone from an inconvenience to more of an actual limitation. I can no longer button/zip things, I am so clumsy (don't ask me to handle your fine china), and my nail beds ACHE. The fingers that hurt the most are the ones with the nails that look a bit discolored and ridgey.
My MO tells me these symptoms generally go away, but it can take some time. In rare instances it can be permanent but I'm choosing to believe that this too shall pass.
I took Glutamine and B6 throughout in hopes that I could avoid or minimize the neuropathy. Perhaps my symptoms would have been worse without these supplements? Can't know for sure, but I'm glad I tried.
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Hi all,
Just wanted to chime in about the neuropathy- it has been horrible for me. My fingertips are either numb or sore - as are my toes and the bottom of my feet. At one point yesterday, I could barely walk to my room without help. It hurts to type and draw. It has me so frightened that I have been looking online for some kind of help. I found a website that sells a supplement formula - and I found a ton of other websites with people talking about it. I have no idea if it is any good or not. It is called Neuropathy Support Formula. On their site, they break down what is in it- so I guess you could try to take the doses listed. Seems like lots of different B vitamins, alpha lipoic acid, and vitamin D. Seems they use special kinds of B vitamins- but I was able to find all of them individually on Amazon. I am going to do the free trial and see what happens. I will let you all know. As an artist, the idea of not having feeling in my fingertips is completely freaking me out. I cried last night for over an hour because I was in such pain:-( And I still have two treatments to go!!! Sorry to complain so much- I am just scared. the website for the neuropathy support forumula is : www.neuropathytreatmentgroup.com
On a positive note, I am finally feeling a bit better- which is good because my husband is back at work and I am watching the three year old today:-) I think the antibiotics helped. I hope that is my last trip to the ER- I hate going there.
As for the five year reunion- I think we should have a real one! Lets go to Vegas or somewhere super fun! :-)
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Cindy: i will look into changing MOs for sure. I have a great network of friends but no family were I live. My friends have been amazing, bringing food on days fter chemo, driving me to rads etc. My DHs sister will hopefully be able to come when he has his surgery. It's just all too much to handle right now. Trying to stay positive but it's hard. It all feels so overwhelming.
Mariposa and Whenlife: Sorry to hear about the neuropathy. I have also heard that it often goes away but that it can take time.
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