Class of 2009 - Sisters in the same time frame
Comments
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Could anyone out there give me their view or if anyone is in my situation tell me how you made your decisions. Here is my dilemma... I have four autoimmune diseases, I take Enbrel injections and then was put on Lyrica also, 20 years of prednisone and 6 years of chemo, plus over 11 surgeries down to the bone. I'm only 55, no one in my family ever had breast cancer or an autoimmune disease. I have IDC, the oncologist said surgery, radiation and chemo, and I said have you read my medical report. I was told I must make a decision. Quantity or quality of life. Without my injections and other medications I can't walk, drive or function. I am a single mother with two teenagers. I don't even know if with such a weak immune system I could handle all the treatments. I was told my medication will cause complications and the cancer will spread rapidly through my lymphatic system. Has anyone else been in this situation? I felt just take both breast off, but they are afraid I won't heal and need antibiotics for a long time through and IV. I'm trying to find out what is out there for me and what choices there are before they present me with medical treatment plans to choose from and sign.
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M360 I am so sorry you have to deal with so much at once. It sounds overwhelming. If I were you I would certainly get another opinion. Depending on where you are located, it might be worth going some place like the Mayo Clinic where they tend to use a team of doctors to advise/consult with you. This is definitely a big picture sort of problem and you need people with expertise in all areas to really put their heads together on your behalf.
Cheers,
Lilah
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Lilah, welcome to our group...it is a good group of helpful and wonderful ladies..
M360, Welcome as well to the group. Wow do you ever have a lot going on..I couldn't imagine the decisions you have to make..I am sorry I don't have nay great advice to pass your way, but I do like Lilahs idea of looking for a good team to help you decide...I guess you have to find someone who you can trust...good luck..
good day to you all, hope all is well.
Just got back from my onc apt. I am freaking out with Taxotere just a couple of days away...actually I am freaked over the neupogen shots...my DH will have to do them...AAAHHHH. God I hate this.
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Michelle -- drink a lot of water and wear the pink wig
That should help!You WILL get through this... and you will be stronger and healthier.
Cheers,
Lilah
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Lilah, you know they all throw out percentages and they are all a little different. In the end we all want to know that we did all we could to cut our chances of recurrence. That is why I am doing chemo, it was not on my agenda when I started this journey. But I am with you, all the percentages confuse me.
M360, I can not answer any of your questions. I am fortunate that I don't have any other health problems, like breast cancer isn't enough. I hope you find the answers that you are looking for. Hugs to you, I think you need them.
michele, sorry you are freaking out about the Taxotere, I have not had any problems with it, maybe you will not either. So your DH will get to stick you, how lucky is he? Tell him to go slow and make sure they are warm. Good luck to you.
I go to the doctor to get my blood checked again, for the second time this week. I hope all the counts are up, but it would not surprise me if my RBC is still down, I get so out of breath. I hope I don't have anything else wrong with me. I don't feel bad just tired.
Hugs for everyone,
Juannelle
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Thanks Juannelle and Lilah, I am staring to calm down now...just trying to not think of it.
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Gesh Ladies... seems like I missed quite a lot yesterday! Hugs {{{{Juanelle, Michele, Lilah, M360}}}}. I completed rads # 5 yesterday!!! I actually had 2 small pin point open areas at about 5 o'clock under my breast, showed the techs said since the rest of the skin looked good she thinks it may be a reaction to the cream they gave me. Told me to stop using so much of it. I'm glad to oblige her for a little while and see if it helps, because I found out yesterday that even though they want us to use the "special cream" they gave us, after the 1st tube, we have to go to the hospital gift shop in another building and buy it (I know Walgreens sells it on line to). However, it is a little pricy, although it seems to be very good, and I have recommended it to others. I think since I had this reaction I'm going to give plain Calendula cream or some aloe vera gel a try.
Pam can you tell me what you used during your Rads? (PM me please as I most likely won't be on till late Friday and will miss this post)
By the way ladies say a prayer my husband is having his arteriogram this morning at 7:30 and we will be leaving shortly to go to the hospital. We won't know till the doc is in there doing his thing if he has to have a stent or anything else done.
Have a great one!
Renee
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Sending prayers to you and your DH this morning Renee. Hope all goes well for both of you.
Michele, sending a hug to you, I think you need one this morning too
Juannelle
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Renee, sending good vibes to you hubby and you.
Juannelle, Thanks for the hug...I feel the love.
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Renee ~ hoping all went well with you DH's test today. Thinking of you.
Michele ~ hugs !!! I am freaking about starting Taxol on the 28th. WE will get through this. It is that darn fear of the unknown again.
Juanelle ~ Hope you are feeling OK !
Hugs all, #4 is kicking my butt !
Alicia0 -
michele, hope you are doing better today.
renee, hope the test went well today for DH. We need to keep those guys well, so that can take care of us.
alicia, sorry about the SEs. I am expecting #4 to kick me around also. Each one is worse than the other.
My WBC and RBC are up to normal range, so that was good news. I have a weekend that I can go out and enjoy myself. I also get to keep my grandson tomorrow after school, and that is always a good thing. My only problem now is that I am short of breath, so I am holding water and have gained 10 lbs since last week, so that is the problem. She put me on Lasix. So I guess I will not get too far from the bathroom for a couple of days.
I also went and got my human hair wig trimmed today and I finally can do something with it. It looks so much better.
Hoping everyone has mild SEs
Juannelle
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Juanelle,
You are always of such good cheer. I wish you weren't having to go through this. I wish it for all of us actually! But you women doing chemo have it the worst. Makes me ashamed to complain.
So I will complain about something else. We drove to Georgia to attend a funeral yesterday. Programmed the Garmin even though we knew how to get to the town. Well, the Garmin told us to get off of I-75 40 miles south of where we would normally exit. It took us on back roads, one was even a dirt road, for an hour! Then, 10 miles outside of town, in the middle of nowhere, it said we had arrived at our destination! We finally found the place, no help from technology! Thank goodness we had a map.
Very long day. 600 miles round trip with a 1 1/2 hour service to break up the drive. We should have spent the night
Alicia...you are in my thoughts. Wish wishing could make it easier on you.
pam
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Pam, I have had some of the same experiences with my TomTom. If you don't have an idea of how you want to go, then sometimes it will take you miles out of the way. I was coming home from my SIL's and I knew how to get home, but had the TomTom giving me directions. It was going to send me about 50 miles out of the way, I am not sure why, but I didn't follow its directions.
Juannelle
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Hi Ladies - Hope all of you had a great day! Today was a day of blessings. My husband actually got a good report!!!! His arteriogram went great and he didnt have to have a stent!!! All of his bypass grafts from 2 yrs ago look good and he had one small rtery on front woth plaque which is no big deal. I completed # 6 out of 38 rad txts today and saw the rad onc and all is well so far. He thinks I may be getting a mild heat rash at about 4 - 5 o'clock on my breast that is being txtd. I think I'm allergic to cream. Didn't really think about it but I'm allergic to grass and such and the cream I'm using has leaf oil in it.
Juanelle and Pam - I have a Garmin and I agree it will give me some of the craziest directions and you end up somewhere and it says arriving at destination and you are no where near what the address is. It's a good thing I mapquest all the directions before we go on a trip for back up. LOL!! or there are many times my husband and I have driven to races we would have gotten lost.
Renee
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Hello all!
Michele and Alicia- I hope you are both feeling well and getting thru your treatments. Hugs to you all!
Renee~ Great news for you and your hubby!! What a blessing that he is fine! I am very happy for you.
Juanelle- I agree with Pam, you are always in such good spirits. With what you are going thru, I too, feel bad for complaining of any ailments I may have.
Pam~ Hope you are diong well! I put a Tom Tom on my Christmas list, I heard they are the best! I really need one. I work for an insurance agency and when I go to look at a new home I am insuring it would be nice to have that and not have to print a map from Mapquest
Warm gentle hugs to you all! Hope you all have a nice restful weekend
Jen
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I was diagnosed in November 2009 and had a modified radical mastectomy Dec 16th. Waiting on the final pathology report to see what happens next. I am two days out of surgery and am doing pretty well no pain my ON Q Pump is working great. So far I am doing well thru this. Just wandering what will come next and what my options are going to be once I get my results.
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Dsl, a giant sized welcome....sucks that you are here, but we are a great group of gals. I am sure you will enjoy all the support, suggestions and laughter.
I guess the first and hardest step is to wait and try not to worry to much...Your doc has to get your pathology report to see what is going on. My guess is that he will also refer you to an oncologist as well..The waiting is for sure the hardest part..good luck to you.
Renee,, wha hoo for your DH...good news for sure.
I made it through my first Taxotere, and had no problems...I was in the new and improved building...nice and bright.
later ladies....I am riding the roid train, but still havn't decided what is for supper.
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PJ , my husband thinks I am crazy, but I am all about the maps. GPS is good if you are lost, but I trust maps. I am almost a luddite about this.
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Thanks a Reach for Recovery volunteer came out to see me today and told me about this site.
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A Big Thank You To All,
I live in Northern California and do have a team of doctors. In the past I had a team at the Cleveland Clinic. So I had four doctors calling me saying that they are doing a major consult on how to treat my cancer or not treat and allow me to continue medications and just watch. Enbrel the doctors told me will cause the cancer to spread more quickly, and I'll have more complications. So I wait while they all consult my medical conditions and records. I've had ultra-sounds and core biopsy. Then the call that it's IDC, and treatment had to begin immediately. I told the coordinator that the doctors were consulting,she said oh, didn't see the notes I'll get back to you. More waiting and no one will tell me anything more than it's Stage III. Today I have had a fever of 102, and my inside arm near elbow has now swollen where the lymph glands are. Looks like I have and egg on my left arm, wondering if it's now in my arm? My daughter said go to the hospital, but I don't think there is much they can do on a Friday night. Ladies I'm so glad that I can come here and not feel alone. All of you have been so kind and accepting. I thank you for that. I like the suggestion of a pink wig, I'll keep that in mind. A friend told me to give your cancer a name, she suggested Eddie, and just keep telling him to leave my breast alone. So yesterday I was at the pharmacy and having pain in my breast and I turned to my daughter and said could you ask Eddie to leave my breast alone. The guy in line next to me said loudly, I'm not touching your breast. I couldn't stop laughing nor my daughter, to be standing next to some guy name Eddie at that exact moment. So ladies it might just give you a laugh too.
Hugs and Hope to All of You!
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M360 that is such a riot -- Eddie -- and that the guy in line said he wasn't touching you! OMG I am laughing out loud!
But not funny is your situation and your pain. I am so sorry for that. Can you call your doctor(s) and tell them what your symptoms are (the fever, the swollen glands)? I don't know that it's a good idea to wait. My oncologist had an on-call number all weekend... maybe one of your doctors does as well. They may tell you to go to the hospital (or not) but at least a doctor can hear what is going on.
Hope you feel better soon.
Lilah
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Renee ~ so glad all went well with the DH !
Michele ~ yippee ~ on making it through your first Taxotere with no problems !
Juanelle ~ sorry you are retaining water.
Hope everyone enjoys the weekend the best they can and has few side effects ~
Alicia
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Doing good today. The poop fairy paid a visit...I know TMI. I only had the bed sweats a few times last night. My darn cat keeps waking me and then the roids won't let me get back to sleep. oh well.
My mom comes tomorrow, will see if this is good or bad. I havn't seen her since this all started. I am an only child from her so I am hoping this is not going to be a cryfest. My sweet daughter has taken it upon herself to help. She is only 10...now if only I could get my son on board..
hope everyone is have SE free days...hugs to all
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Hugs Michele ~ get some rest, throw kitty out of the room !!!!!!! I hope your visit with mom goes well tomorrow tears or now tears.
M360 ~ glad you have not lost your sense of humor. Hang in there !!! Hope your arm is feeling better soon.
Hope everyone is having a good day !
Alicia0 -
dsl.. Welcome to our group! I'm really sorry that you had to join us... I agree with Michele waiting on the final path report is hard and then the surgeon will most likely refer you to see a Medical Oncologist. I think that is the route "most" of us have gone, although some of us have done chemo or radiation, some have not had to do either and only had to take the oral meds that are prescribed. So much luck to you!
Cookiegal.. Nope like I said before I am with you on the maps they are good back up in case the GPS decides to get you lost. Haha!!
Well we went t.v. shopping last night and we are no closer to finding and buying a t.v. than we were before we left. My husband is just to darned picky!! I mean It's a television set!! I don't want to add a lot of money to the bonus he received to purchase it. So sue me... I still have some Christmas gifts to buy for my kiddo's and grandchildren. I don't want to go in debt for a t.v. I don't think we need one the size of the wall to be able to see Nascar when it comes back on. LOL! Wish me luck. :=) Off to get ready for my first of several (over the next few days) Christmas dinners.
Renee
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I have a question about telling people about your cancer? When I was going through the tests I told a few close friends and immediate family. Then when I found out the treatment plan, I told some more close friends. I missed Chemo due to a low Oncotype DX Score (7) so there's no outward sign that I have cancer.
I just skipped a holiday party because I feel so funny telling people that I don't see a lot that I'm great and had a great year. At Christmas I will get together with cousins and I haven't told any of them. Did you tell a lot of people. It's not that I want to keep it a secret but I think I'm trying to down play my cancer. How many people know about your cancer.
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Hi webstertoo,
It's a delicate balance, isn't it? I am a private person so I would have predicted that I would tell no one. But early on I decided that I was not ashamed of my DX and I was not going to try to hide it. Probably no use anyway as I live in a small town and news travels like wildfire. I go in the grocery store and a clerk inquirers about my health
And to my amazement, I don't mind! What I have discovered is that my health is not going to turn in to a three hour dinner topic. If people spend 3 minutes on it I am surprised. As soon as they tell you about someone else with cancer or their own recent medical problem they are on to something else. RARELY is someone really interested in any details and I can quickly deflect questions if it looks like one particular person is going to obsess about it. If someone, a relative say, really wants to "talk" I suggest we call and talk details in a "more private atmosphere." They hardly ever follow up.
Maybe my relatives are all narcissists and my friends are all self-absorbed. Maybe most people think a little surgery and you're cured. Whatever... it has been both disappointing and a blessing. Like I have said many times... ONLY THE WOMEN HERE REALLY UNDERSTAND.
pam
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Webstertoo, It is okay to say to people you don't feel good. For some reason so many feel that they have to say fine when people ask how are you. Even at the grocery store when the check out person says how are you today, I answer "partly cloudy". Cancer has made me a little cloudy and the tears at times is my chance of rain that can happen when I think oh, I wish I didn't feel so much pain. In my life, I have loss 8 friends to cancer in the last five years. I'm the one who people counted on to help them talk with family and friends and hold their hands in the last hours in life. So talking about cancer has been a topic for most of us at one time or another. During this time you need support and for people to be understanding. It's not your fault you got cancer. It's not something you wanted or wanted for anyone else. Down playing is something I do alot. I present well, even my doctors say the way you present yourself in life no one would know that you are as sick as you are. But that's me. We all deal with a situation different. So now that I have gone on and on. You need to do what feels best for you. It's okay to say this year has been the pits, I'm sure hoping 2010 will be a better one. You don't need to tell people if you don't want to, but it's okay if you don't feel well.
Micheleboots, my daughters have Maine Coon cats, they never woke me up or climbed on my bed, but since the cancer, I can't get rid of them. They want to lay right over my left breast and arm. They will even do these groans while laying there. I'm sure your cat understands your suffering and the only way they know how to tell you they are there for you is to wake you up and check to see if your are okay. They think they are your nurse. It is annoying at times, but then other times I just love they are there when I really feel bad and I don't want to talk to anyone but just love the companionship of them next to me. Hope your feeling better and I hope your visit with your mom will be one of sharing and caring and support for you.
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Good evening ladies:
The fatigue has really gotten to me the last several day. I have been reading all the posts, but have not had the energy to post anything myself. I am so tired of being tired. I will barely get over the last tx, when it is time for me to have another next week. At least it will be my last.
webstertoo, I told everyone. I had a friend die last year from breast cancer and she didn't want any one to know, we all knew, but we couldn't talk to her about it. I wish many times that I could have helped her in some way, but I couldn't. So when I found out I had bc, then I told everyone and also told them they were allowed to talk about it to other people. I just asked one thing, that if I walked into a room and they were talking about me, that they not just stop and look at me, like I had caught them doing something they shouldn't have been doing. This has worked very well for me, because if anyone has questions, they know they can ask. I have also worked at the same place for 23 years and I know just about everyone and I knew once the word got out, there would be lots of questions. I have never down played the cancer, it is what it is and I had to face that fact. We are all different in how we handle our situations and you will figure out what is best for you. Good luck to you on this journey. P.S. I am glad you did not have to go through chemo.
Renee, what is it with men and they big T.V.s? We have a 60 inch, but my DH would have the whole wall covered and the room is only 17 feet wide. You would be able to see their nose hairs. Now who wants to look at those? Good luck to you.
michele, glad you worked everything out...lol I know how it is believe me. Hope you have a good visit with your mom, I am sure there will be some tears, but that will be OK, she is your mom after all. Put yourself in her place and think what it would be like if it was your daughter. We never want our children to hurt. Good luck to you also.
M360, I love your story, I haven't thought of naming my breast, but it sounds like a good idea and makes for interesting stories.
Good evening to Alicia and Lilah, hope you are both doing well and having a good weekend.
Juannelle
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Juanelle - LOL!!! I read my husband your post about the t.v. and he said that men want it to be like they are right there... that's why they want to be able to see the nose hair's. Hahaha!!! As for the last treatment you can make it through you only have that one left and I know you are tired but think of it like the little engine that could... "I think I can, I think I can" and you will get over that hill and fly down it home without running out of steam.
Michele - glad things are going well with your visit with your mom.
Yes, I did tell most people about my breast cancer. I found that it has made my life a lot more easy. I am a very open person though! Even my resident's at the Assisted Living where I work know. My resident's, staff, and family have been my support system and have gotten me through many difficult times (besides you wonderful ladies on here). It has helped ease the tension's of everyday life because I do not have to be secretive about anything. If I'm having a bad day and feel really bad I can tell the resident's or staff and they understand and they pick up the slack for me. I am always on call 24/7 but they haven't been as quick to call me over petty things since I have gotten cancer and been going through radiation treatements. I also find that I use my Breast Cancer as my testimony of what God is doing in my life. Anyway I hope you find some peace and are able to make a decision that will be the right one for you.
Many Blessings
Renee
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