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Starting Chemo in Nov. 2011...anyone else?

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Comments

  • linnyhopp
    linnyhopp Member Posts: 466

    Beth...wonderful news...so happy for you!

  • bahamamom3
    bahamamom3 Member Posts: 275

    Woo hooh for clear margins Beth! I wish everyone many blessings in the new year. Here is a funny one for you...the other day my husband said he had a question for me to ask my MO later this month when I have a check-up. He said he noticed it started around the time I had chemo and is still happening, that some time in the night my skin gets really hot, my body temperature is so high he can't stay close to me. So I said ,"Let me get this straight. You want me to tell Dr. Joseph that your wife is too hot for you." We had a good laugh about that. Stay well sisters.

  • linnyhopp
    linnyhopp Member Posts: 466

    Too funny, Bahamamom!  Love that story.

    Where is everyone these days?  Recovering from the holidays? 

    Hugs to all!

  • Nel
    Nel Member Posts: 597

    Good morning all,

    Bahamamom  - love the story!

    Beth - hope you are continuing to do well

    My vent - my son (20) he is making me crazy, fought again this am for the second time in 2 days.  Quit his job, working on this pyramid scheme and no money to pay his bills.  Won't call his probation officer -hhmmm how long before that bites him in the butt?   Not long I fear.  He is one of those kids that has to beat his head against the cement wall about 100 times before anything sinks in.    And I have my 3 month CT Scan next Tuesday, scananxiety in play big time.   Kids don't know that, don't know I am stage 4.    And I have had lunch and drinks a couple of more times with the "date" from a week or so ago.  Very attractive, considerate, lots of things we can talk about, all about me when I am with him (how is that for a change in my life) , but is really just looking for a friend with, sshhhhh I didn't say this, occasional benefits. .Very upfront about all this, wife died with BC, his Dad died a week ago, new grandchild on the way - not sure he has much more to go around right now.   So, not that I am not OK with that, the difficulty is I could really like him and more would be nice.  Have to decide what my emotional health can tolerate. Step in or step out???  That is my dilemma.  Sorry for the oversharing   And yes at almost 60, I am creating this dilemma myself!

    Everyone stay warm!!!!

    Be Well,

    Nel

  • bahamamom3
    bahamamom3 Member Posts: 275

    Linda-I am just plugging along trying to get off the 3 pounds I gained during Christmas, got 2 more to go if I can win the battle I am currently having, wanting to get up and finish making the rest of the coconut balls I had made. I wound up with a whole container full of the frozen balls that I didn't dip in chocolate yet, and they are calling my name as I write this. My husband and I got a pool table for ourselves and cleared out a lot of the furniture from the basement to have a place for it. Most days we play for an hour or so after dinner. We are not good or anything, but it is fun and different for us. 

    Nel-I know how frustrating it can be to know what a child needs and should do and be pretty much powerless to make him do it. My oldest daughter fits this category. I guess after 37 years even though I do love her and want her to be successful, I have finally reached a point where I don't stress too much over her. Of course, there is one big difference between her and your son. Most of the time over the last 18-19 years, she has not lived in the same state and much of the time was not even communicating with me. She did live with me for about 2 years in the last 3 years and it was very difficult to keep my thoughts, wishes and expectations for her to myself. So I know that letting him just figure it all out for himself is much harder for you with him living there with you. Hopefully, God will give you the strength to get through this. I do think you need someone to confide in. I understand why you don't want to tell your children of your stage 4 diagnosis, but you have to have someone you can vent to who can support you and see that you take care of yourself. Maybe that is your gentleman friend, maybe someone else. I can't advise you on how you should handle this relationship because I have been married to the same man for 41 years and just would have no idea how to start dating again. But it seems like to me that if he makes you happy and provides some sort of comfort to you, ithen continuing to see him makes sense. As for the scan, I think it is perfectly normal to be anxious about that, very understandable. We will be hoping for the best for you next Tuesday. 

  • GrandmaV
    GrandmaV Member Posts: 1,045

    So bahamamom is too hot for her hubby.   That was funny.

    Nel,  Lots of people go to the school of hard knocks. But usually when they finally learn, they learn it well.   I have plenty of family members that went to that school.  Some are still there.    As for your dilemma.  You're not creating the dilemma, he is.   Be careful, Nel.  I'm glad he was upfront about it, and you enjoy his company, but the occasional benefits part scares me.  I'm so afraid you'll get hurt.   I'm not in your situation and might feel differently if I was, but I just think that part sounds selfish on his part.   I don't know if you even wanted advice or just a listening ear, but to me, his needs are irrelevant.  I'm also suspicious.  Do you know for sure that what he says about himself, i.e. -wife dying of BC, Dad dying, new grandchild - is true?  or is it a ploy to get you in the sack.  I've learned from bitter experience that some people are very good at manipulating others to get what they want.  I'm sorry if I'm out of line with this, but my concern is for you. 


  • bethu77
    bethu77 Member Posts: 263

    Nel - at this point, you have to take care of yourself first. The new man in your life sounds wonderful but proceed with caution. Grandma V is right, he may not be all he says he is. I hope for your sake that he is the real deal. Our children can be the most frustrating things on the face of the earth! We want to help them but there comes a time in our lives when we have to step back and let them soar or fail. My daughter has changed so much and we finally have a relationship again.

    I finally caught the sickness that has been going around. I got my drain tube put yesterday. I had forgotten how much that hurts when it comes out. I will start Taking Femara every other day soon. I want to finish my antibiotic first. Is anyone else taking Femara?

  • Nel
    Nel Member Posts: 597

    I appreciate everyone's concern, I have great self protective reflexes!   Googled, and found back up for everything he told me.  Love google!!   I enjoy his company when we are together and will keep up the shield!  

    Scanxiety taking over, CT Scan on Tuesday.   Hate this and I know I won't be able to hear what my onc says when he enters the room.  Good or bad - I have difficulty processing.  And that is why we have friends come with us!

    Stay warm

    Nel 

  • GrandmaV
    GrandmaV Member Posts: 1,045

    Beth, I've been on generic femara for 1 year, 9 months, and 8 days, but who's counting?  I had a lot of side effects the first year (hot flashes, joint pain), but they tapered off and now I hardly know I'm on it.  My onco says your body adjusts to it, it just takes time.  I also think the supplements I take help too.  If you look on drugs.com there are a lot of side effects listed, but like everything else we've been through it's different for everyone.  I keep up with the femara thread and post there occasionally and from what I see most women don't have any major problems after they've been on it for a while.  I think it's a shock to your body at first when all the estrogen is gone.  The most common side effect is it thins the bones.  Your onco should order a dexa scan for  baseline bone density before you start and then you should have a dexa scan every 2 years while on femara to see how it's affecting your bones.  If your onco hasn't mentioned the dexa I would definitely ask about it.  My onco has me taking 1000 IU of calcium and 800 IU of vitamin D3 to try to stave off thinning bones.  I have since increased my D3 after research.  Your body can only absorb 500 IU of calcium at a time, so I take 500 IU in the morning and 500 in the evening.  My multi - vitamin has 500 so it's the morning dose and then I take calcium citrate in the eve.   If you'd like more info on what I'm taking for side effects, let me know. 

  • GrandmaV
    GrandmaV Member Posts: 1,045

    Nel, that's good to hear.  Make sure your shield is thick and body length.  I hope he continues to be a source of enjoyment for you.  

    I'm  nervous for you about the  ct scan.  Hoping and praying for clear scans.


  • bahamamom3
    bahamamom3 Member Posts: 275

    Beth-hopefully you will recover soon from your surgery now that the drain is out. I hated that thing and felt much less "sick" when it was gone. I have not taken femara. I take arimidex instead. I think they are pretty similar, and I agree with Grandma that the side effects can lessen after a while. I had terrible pain in both thumbs (trigger finger) which lasted several months (seemed like years), but now it is much less painful. I can live with it now, but before I was strongly considering surgery to fix at least one of them ( I was afraid of surgery on the BC side because I still have swelling on that side.). I take mine everyday. Is the usual dosage for femara every other day, or is the doctor just prescribing it less often for you since you had problems with arimidex before?

  • bethu77
    bethu77 Member Posts: 263

    I will be taking less because of the severe side effects I had. She said they were all made up of pretty much the same components. I take Vitamin D, Vitamin E, Vitamin B12, a multivitamin and SuperB Complex vitamin. I had such severe pain that I would almost wet the bed so I didn't have to get up. I am going to finish my antibiotic before taking the Femara. 

    Nel, praying for you. I really want everything to go away and we would return to our former lives. I guess this has made us stronger. People say how strong I am and I tell them to hang with me for a while. I still get teary eyed especially when I think of the cuts on my body. 

    Take care and enjoy some good today!

  • linnyhopp
    linnyhopp Member Posts: 466

    Nel ~ Thinking only positive thoughts for your scan next week.  You are so right when you say that we need a buddy when we go to the onc.  I have a 6 month appointment on January 24th.  I had my mammo and it was OK, so I am hoping it's very routine.  I can relate about being nervous because I am always afraid he will find something that I don't want to know about.  I am glad you Googled your friend.  It is amazing how much info is out there about all of us...kind of scarey in more ways than one.  

    Beth ~ It's been over 2 years, but I still remember that "drain pain."  Ouch!  I am so happy that you and your daughter have mended your relationship.  Having problems with our loved ones is never a good time in our lives.  Maybe since your daughter is now a mom, she sees things differently.  I think that's called growing up!

    Grandma ~ Do you take a monthly or weekly medication to protect your bones along with the Vitamin D?  I know I should be taking it, but for some reason I am resistant.  I think I am going to refill that prescription because I am sure the Anastrozole (generic Arimidex) is doing a number on my bones.  

    Bahamamom ~ I am having trouble with my shoulder and it's on the same side as my BC was.  I am so afraid it is lymphodema, but am also afraid to mention it because if it's something that would require surgery I don't know if I would be brave enough to take the chance and cause lymphodema.  This path we have to follow certainly isn't easy at times.

    I hope you all have a great weekend.  Hugs...Linda

  • GrandmaV
    GrandmaV Member Posts: 1,045

    Linda, I have decided I'm not going to take the bone building drugs called bisphosphonates.  The side effects for me are too risky.   I have a history of acid reflux and they can cause that along with some other things that I'm just not willing to risk.  When I had my baseline bone density, 2 places they checked, left femur and lower spine, were found to be normal , but the femur neck showed the beginning of osteopenia.  I decided that for me it would be better to go with a more natural approach.   

    edited to add:  www.betterbones.com has wonderful information about what our bones need.  Click on nutrition and bone health in the green box on the left and scroll down to the 20 essential nutrients for bone health and click on that.  There is a chart with the nutrients and the doses.

  • bahamamom3
    bahamamom3 Member Posts: 275

    I have been having a soreness in my spine. I first noticed it about 3-4 months ago when the tech was giving me an ultrasound treatment on my back and neck. I have been seeing a chiropractor and getting this ultrasound treatment for many years now after a car wreck caused me to have back pain. Anyway, I didn't mention it to the chiro because it was at the end of my appt and the next month I didn't feel it again. But in the last 2 months I have felt it more often. It is sore to the touch just below my neck and about halfway down my back as well. I had a massage, which hurt also. I don't know if it is a side effect from the arimidex, some arthritis acting up (initial bone scan showed osteoarthritis present but they never told me which bones were affected), or (dare I go there) could it be a spread of the BC? I know I will talk to the onc later this month at my check-up, but I don't know if I am over-reacting or what. 

  • GrandmaV
    GrandmaV Member Posts: 1,045

    bahamamom, I don't think you're over-reacting at all.   We are suppose to tell our oncs about any thing out of the ordinary that lasts more than 3 weeks.  That's what they are relying on for further testing.  When I asked my onco what I should do now, he said to complain.   I do think, though, that the AIs make existing problems worse, especially in the bones and joints.  Since you had a previous injury there it makes it more likely to be arthritis rather than BC.   You're doing the right thing by planning to talk to your onc about it later this month and if it gets worse or really concerns you, I think its perfectly reasonable to give them a call to see if a scan could be scheduled before you see him.  I used to feel bad about bothering people for nothing, but I don't anymore.   Now I bother them and pray it's nothing.

  • bethu77
    bethu77 Member Posts: 263

    I had a bone density scan and everything is good. I asked my onco what should I look for? How will I know if cancer strikes again? She said to come see her if I notice anything different about my body. Bahamamom, pay attention to your body. If it doesn't feel right, ask your oncologist and get some answers. The not knowing is the worst. Until your appointment, try not to worry about it. I know that is easier said than done but try. 

    I finally showered on Saturday and boy did that feel good! I'm supposed to take off the steristrips but they love to stick to me! I did manage to loosen half of a strip and cut it. They'll come off when they are ready. When I look at myself now, I wish I had not had reconstruction done. I feel all wrong now but I guess this will be my new normal. It seems so unreal to me. People have asked me how I can laugh and be happy. I tell them that I am not always happy but I try my best. On my bad days, I can't stand to be in the same room with me! 

    I think I may try some dancing for exercise or maybe some belly dancing. Thanks for the tip Grandma V!

  • Nel
    Nel Member Posts: 597

    bahamama - follow up,you are your own best advocate!

    bethu77 - great news

    And my CT Scan today  --   I remain NED!   Wahoo

    Be well

    Nel

  • linnyhopp
    linnyhopp Member Posts: 466

    Beth ~ I totally understand with your question regarding how we will know if we have future issues.  I was also told to watch for symptoms, changes, etc.  I guess I am bothered by that because the first stupid cancer was growing with NO symptoms and I didn't have a clue about it.  I kind of feel like we are just "dangling" out there with no concrete way to keep things checked for future issues.  To me that's the worst part of this entire situation.  Heck, I have more aches and pains than most 80 year olds and I am sure the doctors would think I was crazy if I came in for every complaint I might have.  I am glad to hear you got to take a shower.  To me that was like heaven after not being able to feel really clean when I had the drain.

    Grandma ~ Thanks for the link.  I am resisting the weekly bone drug because one of the side effects listed says it isn't good if you have gird, which is me all the way.  I already take a drug for that, but don't want it to be worse.  

    Nel ~ YAHOO!  I am glad you are dancing with ned!  I am so very excited and happy for you!

    Linda

  • bahamamom3
    bahamamom3 Member Posts: 275

    Nel-great news! Now you can rest easy (at least for a while). That is how I am ...as  soon as I have a check up or mammogram, I am okay for a while. Then as time goes on, a pain or something I read will start me thinking, and that is usually when I get in trouble. I will definitely tell my MO about my back pain, but I agree with Linda. My BC was a complete surprise with no symptoms, so I tend to think that if I actually had symptoms, it would be pretty far along by the time I found it. It is a shame that we don't have a test or something that would tell us all every single year. 

  • linnyhopp
    linnyhopp Member Posts: 466

    Just heard that one of my closest friends has joined the club no one ever wants to join. Her bc was confirmed today. I am so sad and sorry for her.  She knows it  is a definite diagnosis, but none of the details yet.  I hate that still another woman has to make this journey. I just wish this lousy rotten disease could be eradicated.  I am posting this because I know all.of you understand how scary it is to hear of yet another woman having to deal with this for the rest of her life.  Thanks for being here for me.


  • bethu77
    bethu77 Member Posts: 263

    linnyhopp-you mentioned sad in your post and that is exactly how I feel when someone I know is diagnosed. I feel sad. I am going to visit someone today who is staying near the radiation center because she is having mammosite radiation. We are taking her to lunch. When I heard about her diagnosis, it brought back to me the fear I felt with each new diagnosis.

    I am trying to adjust to my new normal. There are times when I need face to face time with someone who has been through this. I went to the support group last night but it is a social group that has been together for a long time. It's tough being the newbie. Today, I feel alone...gotta shake this depression.

  • bahamamom3
    bahamamom3 Member Posts: 275

    Linda-so sorry for your friend. You are right about the club nobody wants to join. I  bet you can help her just by sharing your experience and providing information you have learned along the way. I didn't know anyone who had, had BC (and was alive) when I was going through my diagnosis and treatment. I didn't even know enough to ask questions until I found this board and I learned so much from ladies who were experiencing the same things. 

    Beth-you are right. It is so important to have someone to talk to. I know the support group may not seem to accept you right off since you are new to that circle, but I hope you will go a few more times and give them more opportunity to get to know you. You know that when ladies share something as dramatic as BC, they can become very close, but you have that in common with them. I think you will build a bond before too long. 

  • GrandmaV
    GrandmaV Member Posts: 1,045

    Nel and Beth - So glad your scans were clear. 

  • linnyhopp
    linnyhopp Member Posts: 466

    Thanks, everyone, for your support.  I am not sure what will be next for my friend.  She has some results and the lymph node they biopsied is positive for bc.  I was very sad to hear that for sure.  She will be going for 2 different opinions early this week.  It is just hard to see someone you care for have to walk the path that is necessary for survival.  I am trying to be as supportive as I can.  I am sure I will be posting more here about what is going on since all of you always help me keep my head on straight which will definitely help me be a support for her. 

    I have an appointment with my oncologist on Friday, and I know he is going to give me hell for being so damned fat!  For the life of me, I can't figure out why I can't seem to get a weight loss streak going.  In the back of my mind I think that maybe losing the weight I have to shed is sort of acknowledging that bc could have one up on me and makes it necessary for me to get healthier. Maybe it's a problem for me because I am giving up control of the only thing I feel has been up to me...and that is food.  As I read that, I realize how stupid it sounds and I am not even sure I understand what I just wrote.  Please forgive me for being so needy, but I am hoping by some chance someone understands what I am feeling.

    OK...the pity party is officially over.  I am glad for all the good news all of you share.  I hope it's a great week ahead for all of us.  Take care and know I appreciate each and every one of you!


  • GrandmaV
    GrandmaV Member Posts: 1,045

    Linda, I can relate.  We've given up so much that now we're being asked to give up our comfort food that helped us get through active treatment.  Recovery is hard and different for all of us.  I don't think it really ever ends.   Bahamamom's weight loss and working out really motivated me.  When she told us she had lost 28 pounds, that gave me a goal.  I thought, I should be able to do that.   I'm only making small changes at a time so I don't feel so deprived.  Exercise is a dirty word.  It's not comfort at all, until you find something you like to do.  For me it's belly dancing.  I can't do it very well, but I laugh through most of it, because I look so ridiculous.  But in the privacy of my home, who cares.  I have noticed improvement in my belly.  I actually have some muscle there now.  Something else that helped me is my onc telling me that loosing weight and exercising is just as effective as a year of Herceptin.  So I try to keep that in  mind.  I still struggle though.  When something stressful happens I want to grab something chocolate and sweet and yummy and just indulge myself.   Sometimes I resist and sometimes I don't, but I try not to let it derail me or feel guilty about it so I can get right back on my way to getting healthy.   You as well as the rest of us have been through some of the toughest kind of treatment imaginable and came through successfully so you can do this, too. 

  • bahamamom3
    bahamamom3 Member Posts: 275

    Linda- I also understand your struggle with weight and exercise. Especially the comfort foods...after the treatments were over, I felt like I deserved to eat too much of my favorite foods. It just seemed fair and just after not being able to eat, then not being able to taste...and I certainly didn't think it was fair to have to work out with what was left of my weakened body. But I think I was scared into improving my health with the statistics favoring thinner, fit women with lower recurrence rates. It is still a challenge though. Like Grandma said some days we win, some we lose. The important thing is to keep trying, not to give up. Losing weight is a slow process, slowed even more so by our age and the aromatose inhibitors we are taking. So my best advice is just to concentrate on your successes and be patient with your progress. We may lose a battle or two, but we will win the war!

  • linnyhopp
    linnyhopp Member Posts: 466


    Thanks so much Bahamamom and Grandma...your encouragment is very important to me.  It seems so much easier to accept when the people you are hearing it from have been in the same situation as I am.  I have discovered that I have an additional obstacle to conquer, and that is dealing with a sense of smell and taste that have not fully restored themselves since chemo.  I am going to have to learn to not keep eating and tasting everything in sight to find something that is satisfying.  I am going to ask the MO if he has had other patients with this issue.  First everything tasted like metal and now lots of things taste much differently than I remembered.  It's really weird!  I can't tell you how foul coffee smells, but it tastes OK.  To me, the coffee smells exactly like our dog's food...eeuuww!  Many things are like that now.  OK...this is gross and my husband would kill me if he knew I was writing this BUT...I can't smelll his nasty farts anymore!  Now that's a bonus for sure! Happy

    I am going to take your suggestions and hope they will get through my thick skull!  By the way, Grandma...did you purchase a belly dancing cd or is it on-line?  I love to dance so that might be a way to get exercise without anyone actually watching me!

    Take care and thanks again for the help.

  • bahamamom3
    bahamamom3 Member Posts: 275

    I had my check-up with my oncologist today.  I am a little freaked out right now.  I guess I was expecting her to reassure me when I told her about my spine hurting in a couple of places and say that it was probably nothing, but she just immediately said that she would do a bone scan.  Now, in a way I am glad because if the recent soreness there happens to be due to any cancer spread, then I want to know asap and start some treatment right away for it.  But on the other hand, I really don't want to have any spread to any part of my body.  I know that I have some arthritis in my back, and the arimidex could also be causing some pain, so I don't have any real reason to think the scan would show anything. She also said to stop lifting weights immediately.  I wasn't expecting that.  I did tell her I had been doing the workouts for a whole year now, and she said to stop because since I am having back pain, I need to give my back time to get well. I really want to keep exercising because I am afraid I may not start back if I actually stop.  So I think I am going to keep doing the elliptical machine, then either splash around in the pool some on my own or go to one of those water aerobics classes.  I remember the first bone scan 2 years ago right after the diagnosis.  It is the one where they inject you with something, then you leave for a couple of hours and come back later on to get the actual scan done.  I hate needles!!!!!!!!!!!!!!!!!! It is scheduled for next Tuesday, so I need something to occupy my mind for a week.   

  • GrandmaV
    GrandmaV Member Posts: 1,045

    Linda, I'm actually having the same problem with smells and tasting.  I think these aromatase inhibitors can cause this, although drugs.com claims it to me rare.  I've also had this nagging sinus problem.  I guess that is allergies. 

    The belly dancing is from utube.  There's a whole host of videos to choose from.  I'm doing this one:

     http://www.youtube.com/watch?v=H7SRdzfsF5c

    There is a part 2 and 3 and I'm mainly doing 1 and 2 right now.