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Stage 2 Sisters Club

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  • JDB53
    JDB53 Member Posts: 139
    edited August 2013
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    Hello all,

    Hope everyone is doing well. The little woman is home resting. She told me she really is fatigued today but otherwise doing ok. Thank God for no bad SEs. We live in Morris County, NJ up by Washington's headquarters in Morristown,  just wondering if there are some of you NJ folks by us? Have a wonderful weekend!

  • NisaVilla
    NisaVilla Member Posts: 505
    edited August 2013
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    Thanks JBD for encouraging words. You are right, it is time for me to start planning the new future, one that will include reconstructive surgery and Amiridex in October. Your wife seems to be doing very well with SEs, nice! I hope you find active members of this community in your area.



    Has anyone seen/heard from Jcolford? I miss her.



    Now back to elevating my feet and watching bad TV - edema in my legs is bothering me.

  • Robin3
    Robin3 Member Posts: 93
    edited August 2013
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    Hi ladies! I am also a Stage 2 sister. I already know Traii (hi! :-) )  I have finished chemo and radiation and started tamoxifen this week. How did we all get here? It's nice to have a Stage 2 place and also know you aren't alone.

    Robin

  • misswim
    misswim Member Posts: 472
    edited August 2013
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    Stage 2A And 2 Years Out!

  • pupmom
    pupmom Member Posts: 1,032
    edited August 2013
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    Woohoo, miswim! I'll be there this October!

  • NisaVilla
    NisaVilla Member Posts: 505
    edited August 2013
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    I am having trouble with edema in legs, ankles and feet. Some in my face but mild. I have been in bed with elevated feet with little relief. It is severe enough my onco thought the swelling was from a clot but an ultrasound came back clear. Cant take Lasix because my blood presssure is low - it is always very low. I was told my chemo might be to be decreased or postponed. Has anyone dealt with this and how was it resolved? My last chemo is supposed to be Monday and I am ready to de done! Thanks, Nisa

  • Mely19
    Mely19 Member Posts: 66
    edited August 2013
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    Nisa, what chemo are you on again? I had severe swelling with Taxotere. It was in my hands and feet. It was very painful and made it hard to walk or touch anything. I ended up having to delay my next treatment by a week and they cut down the dosage for the rest of treatments. Also once the swelling went down, my skin peeled off.

  • NisaVilla
    NisaVilla Member Posts: 505
    edited August 2013
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    Hi Mely,



    Your question reminds me I have to update my profile - chemo brain! Thank you for sharing your experience with this. Weird to think that I want my feet skin to peel off if that means the end of edema - walking is really difficult, my hands less so of a problem.



    Yes texotere it was! I was going to get 6 TC, then it was changed to 4, and it was further reduced on Monday due mostly to neuropathy and less to the edema. Not fully completing my treatment plan makes me nervous. We're you ok with it?



    Thanks, Nisa

  • Mely19
    Mely19 Member Posts: 66
    edited August 2013
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    I had the severe swelling with the first of 4 taxotere treatment. Did the AC first so I felt like I at least got thru the first half. I went crazy trying to find a way to ease my swelling and pain. Emailed my onc, called the chemo nurses, checked online, talked to the pharmacists. Chemo nurses suggested drinking a protein shake like ensure, pharm and onc didn't really think a diuretic or more steroids would help. Sorry to say but nothing really helped except time.



    Remember its a cumulative effect and each dose after would have been worse. I was actually really happy to hear they were cutting it down. I had severe bone pain and fatigue with it also. I honestly didnt think I would be able to handle it 3 more times. You have to balance out the side effects and hope that what we have done so far is enough to kill off all those cancer cells!



    Are you still doing one more or are you done now? I think many on this board just do 4 rounds of TC and are just fine.

  • specialk
    specialk Member Posts: 9,237
    edited August 2013
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    Swelling can come from chemo, or the steroids, or both.  I had pretty severe swelling, without elevated blood pressure, and was given Triamterene (a diuretic) to take from the mid-point on.  I did have to continue it for quite a while after chemo was done.  My chemo was not delayed and the dose was not reduced.

  • Mely19
    Mely19 Member Posts: 66
    edited August 2013
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    I always find it so interesting how different everyone's chemo experience is even if you are on the same treatment plan.



    I had one of those blah days today. You know when you just feel down though there's not one specific thing bothering you but the whole past year of surgeries and chemo seem to just weigh you down today. I'm usually a positive person but your brain starts to wander in places when left alone for the day. Just reached my 1 yr mark. Wondering when if ever I will finally stop being reminded of my cancer. The scar will always be there but I guess I'm wondering when I will stop sighing every time I look in the mirror.

  • JDB53
    JDB53 Member Posts: 139
    edited August 2013
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    Ladies is Taxol the same as Taxotere?  My wife starts dense dose Taxol on Tuesday, 4 rounds every other week,  and kinda nervous about it. The AC was rounds were not bad at all for her.

  • maureen1
    maureen1 Member Posts: 87
    edited August 2013
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    JDB53, they are both in a class of drugs called taxanes so they act in a similar way but they are different drugs. I had Taxol, same regime as your wife, dose dense AC followed by Taxol. For me the Taxol was easier than the AC but everyone is different...The Taxol did not have as may GI side effects for me but the infusions had to be slower and longer and there were alot more meds needed to prevent side effects, like steriods that caused some swelling. I didn't have any allergic reaction to the Taxol and I could start eating more "normal" foods again. Also my hair started to grow back on the Taxol but I lost my eyelashes and eyebrows towards the end, oh well... Hope it goes well for your wife...I'll keep her in my thoughts and prayers on Tuesday, good luck:) (((Hugs))) Maureen

  • JDB53
    JDB53 Member Posts: 139
    edited August 2013
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    Thank you Maureen. Your DX just like ours. I hope we have same experience on Taxol. Our MO says its should be easier. Ill keep you posted!

    Joe

  • NisaVilla
    NisaVilla Member Posts: 505
    edited August 2013
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    SpecialK - it is such a chemo brain day for me that I can't even remember whose posts I responded to just a few hours ago. Thanks for sharing about your edema troubles. I am feeling better that this will go away.



    As I see the long list of events under your post, I can only feel admiration for your strength as you went through the process - many surgeries! How would you compare the hormonal treatments you received? I will be going on that next month and my onco likely will be given me a choice, even though I am tired of making difficult choices!



    Thanks, Nisa

  • NisaVilla
    NisaVilla Member Posts: 505
    edited August 2013
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    Mely - I think I am fully done with chemo but Onco said we will talk about maybe one more round depending on neuropathy. If you saw me right now, you would know why I think I am done...took me 10 minutes to get downstairs to lunch while grabbing onto humans and furniture. Cant wait to Monday! Thank you, Nisa

  • jcolford
    jcolford Member Posts: 70
    edited August 2013
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    Happyt Friday before the long weekend everybody! Sorry I have been AWOL but I am in the process of returning to work gradually and even though I am doing 4 1/2 days a week by Friday I am too tired to think (and I have an office job). Everyone at work is great to the point that I cannot stand them! They are mothering me so much that I am suffocating. I am there but no one wants me to do anything and to be honest it gets pretty boring sitting at a desk staring out the window.

    Recently finished up a round off tests and went to see my GP for results and he was shocked at how good I looked I guess the last time I was in to see him I must have been a memorable mess!

    I was told that I will have to have alternating MRI's and Mammos along with CA-125 blood tests alternating with Pelvic and Abdominal US every 6 months - talk about major scanxiety!

    My surgeon wants to do a pmx on my right side but I too am so sick and tired of being carved up, poked and prodded that I told her I wanted to wait until next summer - and those mammos are just so darn fun!

    I do have some good news to share even if it isn't mine directly. Out of me and my 4 siblings only my baby sister and I have the BRCA1 gene. I am so relieved for the rest of my sibs and sad for my baby sis. She is going in September for pbx and recon. She also has 6 children who will need to be tested.

    Forgive me for rambling on without acknowleging the other posts but I have been all after noon catching up on all of my favorite threads that I am sure if I comment it will be so confused that you will all think I am drunk. Tongue Out

    Here's to a restful weekend (raises glass) with only self induced SE's!

  • specialk
    specialk Member Posts: 9,237
    edited September 2013
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    nisavilla - your comment was sweet - I don't know if it required any particular strength - they were just things that had to be done - I had a number of issues with healing that resulted in removal of my expander and several skin excisions.  There were days that felt like the movie Goundhog Day, and they knew me at the surgery center, lol! I started hormonal therapy after I was about a month PFC but while still on Herceptin.  I was initially started on generic Femara (letrozole), and had the usual side effects, but none of them were particularly problematic for the first six months.  At that point I developed a pretty severe trigger thumb which made cutting with a knife/writing with a pen/using scissors, etc. very difficult - this was my dominant hand.  I immobilized the thumb with that stick-to-itself tape.  At my next onc appt. he suggested a switch to generic Arimidex (anastrazole) to see if the thumb would resolve.  It did, but I will never know if it was the taping or the drug switch.  I took Arimidex for about a year and then had issues with more triggers - this time wedding ring finger, a toe, and my left ankle.  I also developed intense pain and swelling in my right knee after running into a trailer hitch, which required a cortisone injection.  At my most recent onc appt. I requested to switch back to generic Femara since I had developed these problems on Arimidex I felt that I might as well be taking the drug my onc felt had the best performance record.  When I filled the prescription it was a different manufacturer and so far, so good!  All the previous issues have resolved.  When I took Femara initially I had taken the pink pill by Mylan, but now take the yellow pill by Teva.  Many women have differing side effects with each manufacturer due to the additives that are unique to each.  If you have problems you can either switch drugs, or switch manufacturers.

  • NisaVilla
    NisaVilla Member Posts: 505
    edited September 2013
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    It is Monday and things are looking up for me. Edema is going away but not neuropathy. Still, I am happy I can recognize my feet again. Oh silly me, how little it takes to make me happy these days!



    My heart goes to those whose weekend were filled with SEs. I hope you are recovering too.



    Jcolford - glad you are back around. Let people mother you. It won't last long so enjoy it now, haha.



    SpecialK - Helpful info on AIs, thanks. Sometimes I wish I were on Herceptin. Every person I know who has been on it is doing wonderfully.



    Nisa

  • specialk
    specialk Member Posts: 9,237
    edited September 2013
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    nisavilla - can't remember if I posted this - I was worried about neuropathy because my mom had it severely.  After some research I asked my onc if I could take a combination of 30g of L-Glutamine, a capsule of B-6, and 1500 mg of Acetyl L-Carnitine during chemo to ward off neuropathy.  He said I could and I did experience neuropathy that resolved between tx (every 3 weeks) until #5, then it stayed, but resolved after a couple of months.  It is worth a try, particularly since you are a bit worried about dose reduction, or a shortened course of chemo.  As far as Herceptin, it is great that we have it in the arsenal, but it means you have a more aggressive situation at the outset - kind of a double-edged sword. Herceptin also carries cardiotoxic risk, and long-term risk from treatment is not yet well understood because Herceptin has only been given to early stage women for about 5 years or so.  We don't yet know about disease-free survival for early stage Herceptin patients beyond this time frame either. 

  • JDB53
    JDB53 Member Posts: 139
    edited September 2013
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    Heading out for 1st taxol round. Kinda nervous. 3 more to go after today.

  • NisaVilla
    NisaVilla Member Posts: 505
    edited September 2013
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    SpecialK - sorry to hear about your mom's trouble with neuropathy, I hope she is functioning well now. I purchased some supplements but have been hesitant. The relationship between chemo and supplements is confusing to say the least. Some strong opinions at both ends: Supplements counteract chemo action OR supplements help overall health during chemo. Assuming this is young sicence and the facts are not all out, I absteined from supplements during chemo but next week will start with some. For now I want to give my body a chance to bring itself back to whatever balance it can achieve on its own, but B6 is defnitiely a go. My onco basically said take whatever you want, we don't know what works or doesn't, do avoid soy because it stimulates estrogen. Geez, thanks. It all seems to come back to my lap for me to decide. I need to find an onco willing to think and guide me in my decisions! Well, I am rambling now. Off to get labs done and hoping to hear my blood looks healthy.



    Joe - good luck with first taxol today. Thinking of you and wife. Please send update.



    Have a nice day everyone. And no pain to those dealing with SEs today.



    Nisa



  • specialk
    specialk Member Posts: 9,237
    edited September 2013
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    nisavilla - my mom's neuropathy was not from cancer treatment, she received two years of Methotrexate and twenty years of steroids for a degenerative neuromuscular disease, she passed away in 2005 (she was 83), but was unable to feel her feet at all as a result of all those drugs, and for the last 2-3 years of her life could not walk or stand and required 24-hour care. As far as the supplements I mentioned they were specifically for neuropathy prevention - when I was done with chemo I discontinued the L-Glutamine, but continue with the B6, and 500mg Acetyl L-Carnitine for neural pathways, and a number of other supplements added after chemo was finished.  Honestly, I don't think most med oncs will advise much about supplements precisely because not enough is known or quantified.  I pieced my regimen together myself after much research and experimentation, based on my own side effects from chemo and hormonal therapy.  I took my list to my last onc appt. (I am now going every six months) and he asked to keep the copy because he thinks my labs (CBC, CMP, CA 27/29, Vit. D) look good.

  • JDB53
    JDB53 Member Posts: 139
    edited September 2013
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    Well, one Taxol down 3 to go! So far all went well. No allergic reactions or side effects yet. (I think the steroids are still in effect) Long day yesterday we were there from 11am to 6pm. Happy to get home and we were both tired just from anxiety of not knowing what to expect. She is getting her Neulasta shot as I type this.  Spoke to our MO about many of the concerns discussed here. You are all a great source of info and very comforting!

  • specialk
    specialk Member Posts: 9,237
    edited September 2013
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    JDB53 - did your wife take Claritin an hour prior to her Neulasta injection?  If not, I highly recommend doing that with her oncologist's ok.  The antihistamine helps decrease bone pain from the injection by helping control the edema cause by the stimulation to the bone marrow to produce new white cells.  Because Taxol also produces bone pain as a side effect, anything that you can do to eliminate it is worth it.

  • wingnut
    wingnut Member Posts: 37
    edited September 2013
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    So nice to find this thread. I'd like to join. I just finished catching up on posts and found myself drawn in. One year from diagnosis is fast approaching. Finding it a little bittersweet. Nervous about follow up appointments and scans and yet so thrilled to have so much behind me. If we didn't have so many expenses, i'd buy a new car too!



    Hope everyone has a restful and pain free evening.

  • NisaVilla
    NisaVilla Member Posts: 505
    edited September 2013
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    Wingnut - nice to meet you, and so glad you found us. The car-thing is very cute. Ever since people shared, I started wishing for a new car too. If you don't mind sharing, I would really like to read what the journey has been like for you? All ok on Tamoxifen? Be sure to post on 9/24 so you can hear us celebrate with you!



    SpecialK - sorry to hear your Mom had such difficult condition. I'm sure it touched the entire family. You seem to be on such a good plan. I am glad you are here to help those like me who are newer to this beast, and have much to learn.



    JDB - hooray to you guys. May the next days be as easy as possible. I too get Neulasta shot the day after the infusion and take Claritin one hour before the shot, and every day for a week following. I can't tell if Claritin makes a difference in me. Bone pain hits on day 5 and visits for 3-4 days.



    Good health to all - especially to those reporting suffering in recent days.

  • JDB53
    JDB53 Member Posts: 139
    edited September 2013
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    I forgot about the Claritin! I will mention it to our MO next time. He did say to expect more bone pain from the Taxol.  I just got to work and before I left I asked her how she was feeling and she said not to bad, a little shaky.  The steroids will be wearing off so we shall see.  So if the bone pain hits on day 5 that would be this Sunday.  Our MO did say to take tylenol for it. Has anyone done that instead of Claritin?  But it sounds like the Claritin actually stops or lessens the bone pain correct?

  • JDB53
    JDB53 Member Posts: 139
    edited September 2013
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    Hello Wingnut!

    Nice to meet you! 

    Husband here. Although my wife is always reading my posts and other comments too!

    I am encouraging her to join this thread and I think she will. Then perhaps Colt and I will start a husbands thread.

    The car thing for me was a necessity not by choice, my lease expired, lol. I hate haggling with car dealers!

  • kyliet
    kyliet Member Posts: 587
    edited September 2013
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    The electric blanket helped my bone pain x