September 2013 Chemo Group

Options
1125126128130131143

Comments

  • knightzoo
    knightzoo Member Posts: 171
    edited March 2014

    LHL-oh good!

    SpecialK...did you have surgery last week?

    Anyone from the Atlanta area? My friend and I are thinking of doing the Susan G Komen 3 day in October.

  • simplelife4real
    simplelife4real Member Posts: 563
    edited March 2014

    SpecialK, Thanks for posting about the scar products.  I'm going to look into them.

    Knightzoo and KJ, great car pics!  My hair growth is about the same as yours, Knightzoo.

    VintageGal, I wish you the best with your surgery.  I'll be thinking of you tomorrow.

  • VintageGal1111
    VintageGal1111 Member Posts: 705
    edited March 2014

    Thanks Ladies! I have to be at the hospital at 6 am, I got the first surgery slot at 7:30. Yay! My anxiety has been the pre op wait. I waited 7 hours!!!! in that cubicle when I had the lumpectomy. It was terrible, starving, thirsty & a killer migraine. So the early time is a relief!

  • BetterDay
    BetterDay Member Posts: 116
    edited March 2014

    VintageGal, good luck tomorrow!  Best wishes on an easy and fast recovery. Keep us posted. 

    Cheryl, I picked BMX over lumpectomy. I had the worst luck with MRIs. Three false positives since this saga started. Really didn't want to keep that trend going. Add to that the other reasons people have listed. Good luck with your decision. 

    Kbeee, let me know how the experiment goes. You're a better sport than I am.   :)

  • KBeee
    KBeee Member Posts: 5,109
    edited March 2014


    LHL, You deserve more than a tooth crown!  I hope your tooth feels better soon.  My mouth aches just thinking about it.

    Vintage, Hooray for an early surgery time!  I loved going in for my BMX because I knew I was going to wake up cancer free, and that was a great feeling.

    I just got the date for my last (I hope) surgery...the fat grafting and nipple reconstruction.  He's going to do them at the same time so I only have one recovery period...hooray!!!!!  It's April 16th.  Apparently I will have these sponge things that have to sit over the new nipples for 2 weeks while they heal.  She said they are big and bulky...oh dear...glad it will still probably be cool here so I can wear bulky clothes!  SO...I would not schedule your nipple reconstruction for summer swimsuit season  if you get a choice!

  • Anonymous
    Anonymous Member Posts: 1,376
    edited March 2014

    Viji, We all have our crying spells.  You have been through so much! I hope your day improved after that! Sometimes we just need to let the sadness and frustration out! 

    Cheryl, I chose an Mx for similar reasons as you! I am small chested and once the tumor was removed, there wouldn't be much left of my boob!  I also hoped to avoid radiation, but in the end I needed an ALND which may not have been the "easier" choice.  I couldn't bear to lose both of my breasts at once and didn't want to endure more surgeries for reconstruction..but sometimes I'm not so sure about this uni-boob lifestyle!  Choices, choices...we all do our best to make the best ones with the information and feelings we have at the time!

  • Art123
    Art123 Member Posts: 115
    edited March 2014

    so I'm a little back from the ledge today. Yesterday was good news and bad news and very long.

    Good news: pathology showed tumor was only 2.5cm, lymph nodes negative. They say borderline fir radiation but still have to speak with BS. MO said they may get a board together to discuss her case further. She is stage 2. She can resume herceptin on 3/25 and us eligible to participate in a study for Kadcyla, so she has to decide between the 2.

    Bad news: we waited around and got the sonogram. When it was done, the guy said we had to go back to doc who ordered for results and not leave hospital. We went back to ps and he sent us to vascular  surgeon, it's about 445 or so, and they want us to fill out forms. I said were not filling out anything until we know what's going on. They redid sonogram and advised she had blood clot in calf. Then we had to get more blood work She's on Coumadin and injections. She has to follow up next Tuesday for another sonogram. We also meet with PS for first fills.  Looks like she cant go in tamoxifen so have to find alternative.

    So we were stressed and unsure as to how this affects her future treatment etc. and then I had to run around to 3 different pharmacies last night to get the drugs.

    Nat us resilient and doing well but aggravated and sick of the unexpected side effects. 

    Vintage: good luck in your surgery.

    Someone mentioned rib pain, nat had that. She's not taking anything fir pain now and has pretty good range of motion.

  • SpecialK
    SpecialK Member Posts: 16,486
    edited March 2014

    knightzoo - yes, I had surgery on Fri. Implants out, new mesh sewn in, pocket work both sides, implants back in. I have two skin splits in the left problem side so currently doing nothing much - antibiotic, hibiclens, silvadene,  telfa dressing, and a lot of quiet. Much improved aesthetic, but other than fat grafting I have to be done now - skin is too thin in that spot. Babyruth is from Atlanta. 

    Simple - hope the scar stuff works

    Vintage - good luck!

    Art - sorry you and Nat are dealing with a new issue. I am aware of someone else who posts on BCO that has dealth with this, and the blood thinners, if you want me to connect you.

  • KBeee
    KBeee Member Posts: 5,109
    edited March 2014

    Art, I am so sorry to hear about Nat's blood clot, but so very, very, very thankful that you were so on the ball and got it taken care of.  When they break loose and hit the lungs, it is dangerous stuff.  I also have a friend (wife of a coworker) that had BMX 2 days after me that had a blood clot which went to her lung.  I also would be glad to give you her e-mail address if you have questions or want to compare treatments, ideas, etc.  She has not had her exchange yet.  She did not do chemo; just radiation.  She was on blood thinners in the hospital and is also on coumadin.  Surprisingly she is on Tamoxifen, which kind of blows my mind, but I think they kept her on some blood thinners or something.  I am so very glad that you caught that early; it had blood clot written all over it, which is why I was so pointed in my response.  It looks like your docs are on top of it...so glad about that, but so sorry that you and Nat are dealing with one more complication in the whole ordeal.   I hope you can both take a vacation when this is all done.

    BetterDay, I got the strips.  Experiment will begin tonight.  I'll keep you posted.  I am such a science nerd :)

    Special K, I hope you heal completely and without complication.

  • alfranco
    alfranco Member Posts: 200
    edited March 2014

    Vintage, I will keep you in my prayers.

    Art, like Kbee said, so sorry you have to deal with another problem but it's a good thing they found it early.

    SpecialK, I hope you feel better soon.

    LHL, hope the toothache diminishes soon.

    Kbee congrats on almost finishing reconstruction.

    Ladies, I hope you are all doing well. Think about each and everyone of you all the time. I would be in the nut house without you.

  • Cougarlicious
    Cougarlicious Member Posts: 114
    edited March 2014

    Art - sorry to hear about the clot, but glad to know she's resilient and has a wonderful husband like you to push for answers and be her rock!  Excuse my ignorance, why can't she be on Tamoxifen on blood thinners?  I don't know enough about it.  

    LHL - your post reminds me I have my first dentist appointment in over a year coming up on Monday.  I'm quite fearful since chemo supposedly rots your mouth and I'm just waiting to be told I have a mouthful of root canals. :( I'm going to a new dentist too which doesn't help.  How soon after chemo are most of you going to the dentist?

    Vintage and SpecialK - wishing you both a speedy recovery!

    Cheryl - my docs pushed lumpectomy all the way, and I was 90% there until my tumor started to regrow.  Then I knew for sure I didn't want to have to worry about this in my breasts ever again, so I changed my mind to a BMX.  At my final tumor checkup when they felt it and confirmed it was indeed growing super fast, the same docs finally understood my change in position.  Post surgery I'm SO happy with my decision, even when the path results showed no cancer in my left breast (prophylactic MX) I was glad it was gone, not mourning that I got rid of a "good" boob.  So I know I made the right decision for me, which is good because I waffled the entire five months of chemo on what to do.

  • Art123
    Art123 Member Posts: 115
    edited March 2014

    Special K & Kbee, it would be great if you could put me in touch.

    Cougar: one of the risks if tamoxifen is blood clots.

    Best wishes to all.

  • kjsimpson
    kjsimpson Member Posts: 445
    edited March 2014

    I Managed Radiation Twice in one day.  (yesterday)  ;-)

    Impressively Maroon and Red Today!

    Special K,  hope you are doing well following surgery.

    Art, sorry about the blood clot.  Sometimes hospitals can be very insensitive with thinking that it is ok for us to be the last to know?

    Vintage,  I hope all goes well!

    KBee, you don't look like a nerd.  ;-)

  • BetterDay
    BetterDay Member Posts: 116
    edited March 2014

    Art, thanks for the update.  Happy to hear about clean nodes and that you were so on top of the blood clot.  Sorry you were in the dark and frustrated for so long.  And best of luck sorting out what's next.

    SpecialK, wishing you an easy recovery.

    My MO sent me for a spinal xray yesterday because this pain in my spine still hasn't gone away.  Waiting for the results.  I hate waiting for results.

  • SpecialK
    SpecialK Member Posts: 16,486
    edited March 2014

    Thanks all!  I am doing ok - just hanging out and trying not to move too much.  I don't really have much pain, and am not taking anything during the day at all except for the antibiotic.  I am surprised I don't have more bruising since I have had some excess bleeding the last few times my port has been flushed, but yay for that. Just the inflamed area and the two skin splits on the bad lefty. I went with my TN friend to her BS appt. yesterday and we got to see her MRI after the three AC she has had - her 3 cm tumor is gone.  That was very good news as she can't have anymore AC since it inhibited her healing so badly.  Looks like she will have a BMX in about 3 weeks and then resume with Taxol.  She is looking at a delayed DIEP down the road.

  • Miss_Mama_Bear
    Miss_Mama_Bear Member Posts: 252
    edited March 2014

    Just popping in for a quick second. I think I pretty much got caught up reading last night but didn't have time to post. I was thinking about scar treatment (my birthday is in 2 weeks and that is all I am asking for if anyone wants to buy me something lol) Anyway, I checked out the links that SpecialK (I think?) posted and did another search and found a really good deal for the silicone scar sheets. They are $2 cheaper than the link that SpecialK posted for some reason, even though they are from the same site. There is also an auto re-order option which says that it knocks off an additional 10% and free shipping on all future orders. Just wanted to pass it along! I am desperately behind on homework and need to get stuff done for my baby's 4th birthday on Saturday, but I will pop back and check in with you all soon! Healthy, happy, healing vibes sent to every one of you! 

    http://www.drugstore.com/products/prod.asp?pid=414081&catid=287261&aid=338666&aparam=414081

  • Miss_Mama_Bear
    Miss_Mama_Bear Member Posts: 252
    edited March 2014

    Oh yeah, and after my fill yesterday, I've got BOOBS! I am so excited lol. I feel like a girl again....mostly :D I'm a little uncomfortable today but nothing like the last time. 

  • simplelife4real
    simplelife4real Member Posts: 563
    edited March 2014

    Vintagegal, I hope things went well for you yesterday and that you didn't have to wait long for your surgery.  It's nice having the first time slot.  There's a lot less chance for unexpected waiting.  Thinking of you.  ((gentle hugs)).

    Mama, glad to hear about the boobs!  I don't know how you have time for everything you are doing.  Homework, raising a family, new love life.  Just post when you can.

    SpecialK,  I'm glad to hear you aren't in a lot of pain.  I was surprised how much it hurt to have my implants and capsules taken out as part of my LX and ALND.  It's four weeks later and my chest is still very tender and sensitive.  Maybe since they put implants back in, it doesn't hurt as much.  Anyway, I wish you the best with your healing and skin splits.

    Betterday,  when is your spine x-ray?  I hope you get the results soon...waiting around for them is for the birds.

    KJ, I'll miss all your witty  IMRT phrases when you get done with rads.

    Cougar, you reminded me that I need to make a dentist appointment.  I just recently moved so I have to find a new dentist.  I'm not looking forward to that first visit after chemo either.

    Art, I hope Nat's recovery from the clot goes smoothly and no more unexpected complications.  You two have been through enough already.

    KBeee, whoo hoo! on getting your last surgery date set.  I have often been very grateful to have been sick and bald over the winter time instead of the summer so I can really relate to you being happy it will still be cool while you are wearing the sponges.  

    Running, I think making treatment decisions with cancer is one of the hardest things.  I agree that we each make the best decisions we can with the information that we have.  

    Yesterday, I saw my local RO for the first time.  He gave me the choice of  getting my  level three nodes in my armpit radiated or not as part of my plan.  It's unclear whether I should do this because apparently the "rule of thumb" is that if you have 4 or more nodes involved at the time of diagnosis you get it done.  Since I had neoadjuvant therapy, I don't know how many nodes were initially involved.  It's a rough decision for me because I like to bicycle ride long distances and getting my level three nodes radiated will increase my risk of LE.  On the other hand, since I don't have a targeted therapy to fall back on, I feel like I need to take advantage of the treatment options I have.  I have a week to decide.  I think I'll email my MO at Vanderbilt and see if she has an opinion.

  • simplelife4real
    simplelife4real Member Posts: 563
    edited March 2014

    Here's a quick pic of me from this morning at 9 weeks pfc...the grey will be GONE as soon as I have enough hair to color!

    image

  • KBeee
    KBeee Member Posts: 5,109
    edited March 2014


    Simplelife,  Hooray for more hair!  I am with you on the coloring gray out as soon as possible.  I am hoping to do that in the next few weeks.  We'll see.

    Mama, Glad to hear about the boobs.  It is nice when you have enough fills to have a chest again.  I hope things continue to go well with your man.

    SpecialK, Glad to hear you are not in my pain.  I hope things continue to heal well.

    Betterday, Praying for good news on the spine xrays.

    Art, I sent you a PM with my friend's e-mail address.

    KJ, We might have to continue the IMRTs after you're finished...or come up with a new acronym.  They've been very entertaining!

    Cougar, Hope the dentist appointment goes well.  I go next month.  It is not on my "things I'm looking forward to" list.

    Alfranco, How are you doing????

    It is Friday, which means I will take another selfie today, and probably update my profile picture with it later.  16 weeks PFC for me. Taking my weekly pictures helps me see a little progress here and there on top.

  • kjsimpson
    kjsimpson Member Posts: 445
    edited March 2014

    Simplelife,
    Looking good!  I like the gray.  You look distinguished!  Regarding zapping your nodes, my vote would be yes. You don't want the cancer coming back and then kicking yourself for 'coulda, shoulda, woulda'.  Under the arm isn't that much worse than the rest of the chest area.  I'm 5 weeks along and under my arm looks the best.  It is a little itchy and tight, but a cotton shirt underneath a regular shirt is all it needs for comfort.

    KBee,
    Lighthouselady and Simplelife start Rads soon.  I wonder what their imaging technology/machine is called?  We could use their acronym.  ;-)


  • mercedes60
    mercedes60 Member Posts: 171
    edited March 2014

    Running, Cougar and Betterday, thanks for the input, I am a little nervous about the MRI on Monday, just hope I don't have any surprises, apparently I have one tumor or mass left from chemo, doc says we want to make sure its not active meaning growing and Betterday now that I know what you experienced I'm hoping that this MRI will be accurate. I will keep u guys posted. 

    Another thing my BS said I would need rads due to the positive nodes,even after mastectomy, on the breast and on the neck, anyone have the neck rads? Why? I was so stressed that day I didn't ask him why the neck, however, I am seeing my onco on Tuesday so can ask him also. 

    Running- uniboob lifestyle couldn't stop laughing, I did have some funny images of me swimming in the warm waters of Madeira Beach, FL in June and my prosthesis slipping out of my bathing suit and floating away scaring people!!!!LoL, OK I am now losing it.......

    SPecial K, hope everything is well with you at least you have that Florida sun to help with that recovery, yuk still stuck in sow here, but planning that Fla vaca in June after all is done

  • SpecialK
    SpecialK Member Posts: 16,486
    edited March 2014

    Mercedes - thanks!  I wish I could go out in the Florida sun, but can't due to extensive skin cancer!  I'm living in the wrong state! 

  • knightzoo
    knightzoo Member Posts: 171
    edited March 2014

    my RO said, if I recall correctly, the nodes under your arm drain to the neck/collarbone nodes and that's why they hit them. I'm getting treated chest, underarm and neck. He also consulted with Dr Recht at Harvard to be sure he was right in recommending rads after my complete response and he said yes, due to the aggressive tumor (basically TN) and node involvement. 

  • kjsimpson
    kjsimpson Member Posts: 445
    edited March 2014

    Our oncologist called me a "miracle patient" today. Dang... I can't explain how good that feels!  So grateful!! Of course, after he said that, he said, "I want to run another scan just to be sure".  ;-)

  • Anonymous
    Anonymous Member Posts: 1,376
    edited March 2014

    Mercedes,  Once, about a month after mx, I was biking with my kids and another family. I was complaining about the feeling of the prosthesis on my scar, and my frind said, "Take it off". So I reached in and took it out and threw the beanbag at the kids! After the shock, we all laughed and tgrew it around!!!! 

    My hair is THICK and grey and sticking up like a chia pet....4 months PFC!

    image

  • Anonymous
    Anonymous Member Posts: 1,376
    edited March 2014

    KJ,

    Impressive Miracle = Really True! 

    Yay for you! 

    Patty 

  • Art123
    Art123 Member Posts: 115
    edited March 2014

    kj, after he says you were a miracle he orders another scan!

    We met with BS, went over pathology. She said we should see RO to determine if we need radiation. She said margins were "close"

    I'm emailing MO Monday to see if she could set up tumor board because I feel like we are not getting enough guidance. I told her based on info I read, bmx with no positive lymph nodes has 6% chance of recurrence within 5 years with no radiation. I also read that implants after rads has like 30% failure rate. Why endure 6 weeks of rads with side effects to have an increased failure rate on another procedure you have to do. I wouldn't do it. But we need more info.

    Nat gets first fill Tuesday along with sonogram for her clot. She's doing much better, says her leg feels normal now. Only 4 more injections.

  • Anonymous
    Anonymous Member Posts: 1,376
    edited March 2014


    Art,

    What stage is Nat's cancer? How big was the tumor? Was it ER+? PR+, HER2+?

    How big were the margins?

    Sounds frustrating! I hope you can get more info!  I have had a great MO.  Some of my initial appointments were over an hour long, as he went over all the research findings relevant to my situation.  I also read a lot of medical journals and asked a lot of questions.  It really helped me with tough decision making.

    Patty 

  • lighthouselady
    lighthouselady Member Posts: 752
    edited March 2014

    Simplelife and Kbeee - I want to color my hair ASAP, too. I was about 20% gray before all this mess started, now it's coming in at least 50% gray. Blah. Even though she's beautiful, I don't want Jamie Lee Curtis hair when I'm only 41! LOL

    Kbeee - I take a selfie every 2 weeks so I can see progress. I saw a HUGE difference from week 10 to week 12, but not so much between 12 and this week (14).

    KJ - I'll have to see what they say next week about my rads... maybe we can come up with something to use to make up acronyms. Only five more for you, right??? Miracle patient - how awesome is that?!

    Running - WOW you have a lot of hair! I'm so jealous! Only two weeks ahead of me and your hair is twice as long. You look great!!!

    Art - I hope you and Nat get to talk to the right person to help you make the best decision possible. I will say that the one thing my PS told me is that life is more important than the breast. He's all about ending up with a good result, but doing whatever is necessary to get 100% healthy is the goal, regardless of what it does to my breast (or future breast).

    I went roller blading today! I wasn't going to because I am pretty sore on the left side where he filled more than the other yesterday. I was afraid if I fell and tried to catch myself on my left side it would be excruciating. I did great, though. We go to the family life center at a local church - skating for as long as you want for $2/person. We met two friends and their kids and had the place to ourselves! Can't beat that.

    Then we went to lunch together. My daughter had a (horse) riding lesson this afternoon, and then softball practice tonight. <yawn>

    Here I am yesterday, 14 weeks pfc:

    image

    On a sad note, my friend with Stage IV ovarian cancer that I visited a few weeks ago went yesterday to plan her funeral.  How horrible is that???  I know she doesn't want her husband and parents to have to do all of that once she's gone, but I can't imagine going into a funeral home at the age of 38 to pick out your own casket and plan your service.  God.  I HATE CANCER!!!!!!!!!!

    Just to cheer me up, here's a pic of my sweet girl riding today:

    image

Categories