CMF Question
Comments
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Pam Sam I am is so r ight! Focus on the beging almost done part...that said, she's right also about getting something to help you sleep. I had luck w/ Elavil (amitryptylline, a mini dose).
Not right after chemo tho, I stayed up for days, due to decadron. Is it possible they might want to cut back on that if you are getting it IV?
We are here, we will get you thru it....you are doing a fabulous job, and I'm pretty sure all of us felt this same way right about where you are in the txtments. Hang in there, hon.
(whos' the hottie in the photo? Very Cute!!) Son? BF? Hubby? You lucky girl.
xoxo
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You know, you'd think at 53, I might be able to spell.......hi all, hope everyone is doing AOK!!!!
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Ladies, on the shampoo that everyone is recommending.....should I start using it before treatments begin or did you guys wait until you were doing your treatments to start using it? Didn't know if it might help strengthen the hair or not......Thanks!
Also, I had my followup with the surgeon today and all went well. I don't have to see her again for 6 months to do another mammo. I'm still dreading tomorrow's oncologist visit but ready to find out what's in store for me....treatment wise, date, how many, etc. Everyone please say a prayer that all will go well.
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About that shampoo -- is that Nioxin shampoo? Where can you buy this? How much does it cost and I'm also interested to know (as cabmom asked) whether to start using it before Tx begins.
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Hi Pam!
CMF'er here that has not been posting on this topic for quite a while--I finished CMF chemo in February, 2008.
Hello ladies! Looks like you are all doing well!!
I too had a horrible time sleeping--Ambien CR did nothing for me, but when onc recommended Xanax, I took two before bed and slept like a baby!!
Hope that may help.
Soft hugs--it will all be done soon enough, and you can then move onward!
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Hi gals:
It is Nioxxin thickening shampoo, I googled it and bought it online, tho I think some salons may stock it.
Smells awful (very strong mint) but if you open the shower door, it's bearable. I'm told it doesn't linger, thankfully. I got the conditioner also, it's great stuff.
You can do it before it you want, but I think you'd end up with outstandingly thickened hair!
xoxo
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Gosh, there are so many different Nioxin products that it's confusing. They list eight different "systems" on their web page. And this stuff is not cheap!0
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Mary, no the Nioxin is not cheap, but I am still using the same bottles I bought when I started chemo in back in March. A little goes a long way, and I started washing my hair only every other day. I bought System 4 because I already had a little thinning on the part. Also, you can buy Nioxin at Great Clips. That's where I got it.
Cabmom, I didn't find out about the shampoo until I started treatments, but if you wanted to start right away, I know it wouldn't hurt.
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Hang in there Pam. You're half done and on the down hill slide now. I'm so sorry that you're feeling so tired and bad. How have your white counts been? Are they low? That sometimes makes one pretty tired. Samiam gave you good advice! This is doable and it will end. You'll be ready to start a new year with a new attitude and treatments behind you. Hugs!
Rita
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Hey I agree. The Nioxin is well worth it and goes a long way. You can start as soon as you get it. I used both the shampoo and the conditioner and really do think it helped!
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Like everyone, I used Nioxin. I googled it and ordered it on line--I don't even remember which one I used but I had alot left after I finished chemo. However, I rushed back to my wonderful pre chemo shampoos and left the Nioxin for hubby who liked it.
Pam: You are almost there. I was very tired during chemo so you are not alone, But if you manage to sleep through the night, you will feel alot better so try a few things and eventually something will work.
Rita, how is your back? I hope you are feeling better.
Day after tomorrow I leave for my trip to San Francisco to see my 24 year old daughter....I haven't seen her since July and that is too long for this mom!!! We are doing a "girls road trip" and will drive to Big Sur and San Luis Obispo for the weekend and then back to San Fran for a few days before I go back to the East Coast. I am so excited for this trip.
I am not bringing my laptop with me so I will be away from the computer for a bit...it'll be good practice!!!
Hugs
Mandy
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Hi sweeties: yes, Rita, how is your back? Hoping that clears up for you soon!
I also got the Nioxxin as soon as these gals reccommended it. I also got a wig, a bandanna, a wiglet, etc. Overreaction? hmmm, yup. I used none of it, except the Nioxxin, which I really really found worked!! I got it online, the thickening ones, both shampoo and conditioner.
Mandy, what fun!!!!!!!!!!!!!!!!!!!!!! You have a great time, I know you are going to enjoy this so much, and your daughter will too!!
love to all; gals in txtmnt, this will become something you did to be healthy, not what you are about anymore, and it'll be soon!!! Hang in there!
xoxoxo
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Well to all the wonderful ladies on this thread....thanks so much for all the support that you've given me. I went for what I thought was my final onc visit to let him tell me when I would begin CMF, how many treatments, etc. and what I got was an onc that had changed his mind and was rude and dismissive of my feelings. I don't like to vent but need advice. I'm scared to death of chemo anyway....no matter the kind but had done my research, spoke with lots of folks and resolved myself to doing CMF. It was doable considering that one onc said no chemo and one said something else. He changed his mind and thought I should do something else. I think my husband and I both was in shock......in addition, he was mean and rude and had an "I'm right" and my opinion is the only one that matters. If you don't like what I have to say, we can't work together on this.....I will refer you, which is what he did. Unfortunately it was to someone that was in his same office, there are 12 oncs there, and now I don't feel that I would get good care from any of them. He seems to be the bully of the office, or king of the hill because he's been there the longest. Ladies.....what should I do? Have any of you ever been treated this way? Did any of your doctors listen and care about your concerns or did they also dismiss your feelings and not care? Several ladies that used this onc had warned me but until yesterday, I had never seen that side of him. I'm just in total shock, upset, scared, confused and unsure who or where to turn to. I don't feel that using a doctor in his same office is wise but.........I had to put all the oncs in that practice in the same pool with non-caring arrogant jerk that has no compassion for women that are going through XXXX. I pray that no one in this oncs family ever gets this terrible illness and if they do, I pray they have a better onc than I had in him......advise please!
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Hi Cabmon..yes I did also have issues with doctors...I went to on oncologist who was just that
way..my way or out, so I switched to another who listened
I also went through four surgeons til I found one I liked and two radiologists..so just do it and get someone else
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SoCalLisa, thanks for the response and this is so hard for me because I've NEVER had issues like this or have I ever been treated with such disrespect nor would I EVER do such a thing to another human being. I think I'm still just in shock that someone or anyone for that matter would treat another like he treated me and even my husband. He truly is a disgrace to his profession. I will pray, get advice from people that have had the same experiences and I know that God will lead to the right decision from those things. He's already blessed me beyond words with a wonderful child and husband, not to mention the rest of my family, wonderful friends and all of the new friends that I'm making here. So I know that when this is said and done, I will be a stronger and better person and he will still have the issues that he has today. He needs my prayers so much more than I need him or his knowledge.
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cabmomn...I hope you find the right doctor for you
I am happy to say I have a son who is a doctor
who is known for his compassion
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Cabmon: That is so hard to come up against such rudeness and arrogance when you have so much else to deal with. But in a way it's better to find out his true colors now rather than later once you'd committed to being treated by him. I don't think I'd want to see another onc in his practice if there were any other viable alternatives.
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Cabmom.....I agree with Mary. You and your onc will be bonding for a long time after the chemo so it's important to find one that can communicate with you and that you respect. It is so good that you found out what your onc was like before you got into the treatment plan. Keep looking until you find somebody who treats you like a person and can work with your decisions and wants, too. I traded surgeons because the first one didn't get the job done or relate well to me and I'm lucky to have an onc that I like and respect and who respects me, too. If you feel that CMF chemo is the correct choice of treatment for you, there is an onc out there that will respect that decision and work with you. The surgery is over and the cancer is removed so you have a little time to look around. Hang in there and stand up for yourself. These are major decisions for you.
Rita
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Ritajean and MaryNY, thanks so much for the encouragement and advise. I do know that it's important to feel good about the people that are treating you and I kind of knew that this doctor was arrogant but had no clue he was this off in his attitude toward patients. I do want to take my time but my biggest concern is how long do I have to make that decision. I've had three surgeries, with the latest being Oct. 1, but my original diagnosis was June 2......so am I getting in trouble time line wise? Does anyone know the answer to this? I need to talk to my surgeon and see what the options are at this point.........
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Cabmom, I can only reiterate what Rita and Lisa have shared ..... your onc will be your "go to" doc for many years to come. You need to be on the same page, feel comfortable to address your concerns and fears. I go to my onc with a list of questions at almost every appt, he takes the time to listen, discuss and give his professional opininion. I have also let him know that I would be seeking a 2nd opinion (which I did more than once) and he was totally on-board with my pro-active care. You are in control my friend ..... hopefully you are not dealing with insurance issues to keep you in one particular office. I know the reality of dealing with referals, etc, but with some effort have basically "gotten my way" with my care. Onward and upward my sister friend .... Carol
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golfer779, thank you so much. I have to be honest and tell all of you that I'm still in a little bit of shock that this all took place but it did. I still can't phantom how someone in a medical professional such as oncology doesn't have any compassion for what his patients are going through. I think that's what really gets me and to be just so mean and rude.....wow, I truly hope that God is watching out for this guy because he surely needs God's help and assistance. I also get that my case is not as bad as others might be and I'm super sensitive to that but still this is very real to me and I'm sorry that I'm scared of chemo and all that goes along with it. I'm sorry that I don't want to take the stronger stuff because it's the "STANDARD" of care. I am only going to be gaining 1 to 2% taking chemo based on the oncotype dx test and by both of the oncs's admittance, so the risk of damaging organs and all of the horrible sides effects that can come with his so called "STANDARD" of care isn't acceptable to me unless he can prove to me that it is and so far no one has been able to. The onc in NC even said no chemo, I actually felt that I was doing more than enough to agree to go with CMF. I also know that CMF is no picnic and that all chemo has side effects but the onc in NC has said that it has less long term side effects although the onc here Thursday tried to tell us that it had more. NOT TRUE.......I can't believe that all that doctor wanted to do was bully me into doing what he said and didn't consider my case at all even though before going back in to him this last time, I was told that he was totally on board with this chemo treatment, both his nurse and my surgeon had discussed it with him and they both had told me that he was okay with it and agreed that it was an acceptable treatment based on the value that I would be getting out of chemo.......
Ladies.....thanks for being so kind as to let me rant and get this off my chest. As you can see by the little rant above, I'm clearly not passed what happened but I feel better just being able to type it and get it out. I know my husband is sympathetic and is still angry about how we both were treated but for me it's much more personal than that......this man is messing with my life and discarding it like it doesn't matter any more than if it was some piece of trash he needed to get rid of. After this, I know now better than I ever knew before that my opinion does matter and that if I don't stand up for myself and research what's right, it's obvious that all you get is what some oncs call the "STANDARD" of care.
Okay truly done now......I hope each of you has a great day and I promise I am going to get pass this and be okay. I have to be for my family......my little boy is counting on his mom being here for a long, long time.
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Cabmom - I can't believe that a onc would be so rude and dismiss your view on your treatment. As everyone else has said, you need a onc that you like and that values your opinion and is willing to work with you. My advice is to find a new office if you can. I would ask people for recommendations. From everything I read and from everyone I spoke to a cancer patient needs to be totally active in their care. That means asking questions and being spoke to in a kind caring manner. Like you said your family is counting on you. So you should be part of the decision of what kind of care you want. I wish you all the best and you will make the right decision that is best for you. And you rant anytime you want. We are always here to listen. Enjoy the rest of your weekend.
Colleen
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collen1960, thanks for the words of encouragement and I have decided to put it behind me and enjoy my family for the weekend. Going to get my mind completely off of it and head out to a corn maze and hayride tomorrow......can't wait! I will definitely be more selective this time around and if there's no interest or concern about my case, I will be done quickly this time around. I'm so glad to hear that all of you ladies think that it's important to be proactive in our treatments. When it all happened, I was so shocked, I started to doubt that but I don't any longer. I was right to be asking questions......thanks to all for helping me realize that.
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Cabmom - Enjoy your day. You deserve it. Hopefully the weather is better where you are. It is horrible here in NY!!!
Hope everyone is enjoying their weekend. It is that kind of day where you just want to stay warm and watch old movies. I think that is what I am going to do!!!!
Colleen
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Hi all:
Cabmom, you know what i think of that jerk of an onc!!! You had it all in my PM..here's hoping you can let this all wash away and not let it get to you any more...he's just not worth it.
enjoy your weekend! Divorce the onc ...as my gf's used to say when we were all dating.........
"next!"Hi everyone, long time no see, Rita, how's that back? Carol, I always love to hear you chime in, it's wonderful to see you, and SOcal Iisa, how have you been? Colleen, you sound great!
love to all my ladies
xlxlxl
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Hey Annie, The back is doing better. It took 4 times at the chiro and some back exercises but I think I'm on the mend for now. I still baby it, though and don't sit for any long periods of time. The activity and my attempts to curb sugar in my diet have resulted in 7 pounds of weight loss so that is a plus!.
We're supposed to get some sun today so I need to get moving to so I have time to work in a walk later today.
Catch you all later.
Rita
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Wow Rita good for you...I was on a diet after armidex and lost 30 pounds, but then
the doctor put me on a beta blocker for my fried liver and now I can't lose a pound
on it, same diet and I gained five pounds
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Oh that's really rotten, Lisa! Is this beta blocker a lifetime med now or only temporary?
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Yep to the beta blocker..it is for the portal vein to my liver..
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Good evening ladies! Just wanted to let you know that I've put the "awful onc" experience behind me and after taking the advice of my surgeon, I am going to check out 3 or 4 new oncs and pick the best fit. Please say a prayer that I find one that is compassionate and actually cares about my case......they can't all be like the one I encountered on Thursday........
Hope everyone is doing well. SoCalLisa, did I understand correctly that the chemo caused your liver damage?
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