Any Northern Virginia ladies on this discussion board?

placid44

I plan to be there on sept. 6th. Just got back from vacation today. Thanks, Odie.

MomMom

Hi odie, At one point we were going for Carlyle in Sept.  Any chance we could go there next month?  Thanks!

odie16

Paula, can you make it to the September 6th luncheon? We could do Carlye Sept or October dependent on which month you are able to join us. I have no preference either way.

MomMom

Odie, Yes I can make the Sept lunch so Carlyle would be great, but will probably be in NC in Oct.  Thank you for organizing!

relocatedtarheel

hi all-i haven't been on the board for months. i finished chemo in Feb without any problems, started radiation the end of April and finished in June. I was late getting chemo because of all of the complications (3 months post surgery) and didn't want to do radiation but was talked into it and did it 2 1/2 months post chemo. I had my port removed 3 weeks ago and freaked out. Had an anxiety attack going into the hospital...started crying and couldn't stop and that kind of thing has NEVER happened to me before. I am scheduled for my reconstruction in December, a DIEP flap, the implants aren't even an option since the left expander continually got infected and had to be removed last fall, and I can't even think about it without freaking out. I just don't have it in me to do it right now and I'm afraid I'm just not up to it and may not be this winter. Did anyone else have anxiety about this?

PeggySull

Hi Relocated,

I didn't have to do over reconstruction, but after the results came back from my mastectomy (I did chemo first and they could give me a percentage of effectiveness of chemo before vs after).  All of a sudden, radiation was mentioned when that had NEVER been discussed before.  The plan was chemo and then mastectomy and reconstruction.  This through me into a tailspin.  There were long delays in getting a consult about this (due to my previous MO and I was extremely  anxious about it for many reasons until I got the consult.  The same thing happened when one of my four diagnosed TN tumors turned out, post-mastectomy, to be somewhat positive and there was a question about hormonal therapy for that tumor.  Much anxiety here too.

My point is that I that any time there is a major change in treatment plans from the initial one, I think that there is likely to be high  anxiety.

You have been through so much pain during the surgery and chemo, I think it is natural to have anxiety attack when you're anticipating another procedure (DIEP).  You've been traumatized too many times!  One suggestion I might make would be to work with a behavioral therapist who can help you to desensitize around surgery.  That might entail only a few sessions if the therapist is good at it.

But you weren't asking for solutions, you were talking about the high anxiety you are experiencing.  I think it would be abnormal not to feel this way after all you've been through. I'm sure there are others on the boards who would agree with this. Jeez, how much are we expected to handle during treatment without PTSD?  I knowi was traumatized and had to get help with that.

Hugs,

Peggy

MomMom

Relocatedtarheel,  First, huge congratulations to you on successfully finishing chemo and rads!!  Those are such milestones.  So sorry to hear of your issues with reconstruction.  That's so discouraging to say the least and you have a right to have anxiety.  Will keep you in my thoughts that all goes well from here on.  Big hugs to you. 

Peggy, You've been through so much take with the changes in your treatment and DX.  These issues can put anyone into a tailspin.  Hugs to you as well.

We sister TN'ers have to stick together:-).   I just had my last chemo July 24, and two weeks later on Thursday will have my first radiation.  Can't wait!  I feel fortunate that so far, this hasn't been too difficult for me.  I know I'm one of the lucky ones for that and I'm grateful. 

Cuetang

relocated --  just from the DIEP boards alone, I'm sure you've read all the "freak-outs" other women have right before their surgeries, and especially "do i really need to go through this?".  You've been through so much more with this process in the past year, you have every right to feel how you do.  Good thing is that you don't "have" to do the reconstruction until you are ready to do so; there are also plenty of women that are happy with their no reconstruction choice.  The DIEP is a huge surgery, and as you know, not without its complications and its healing time, but for me, it was completely worth it (minus the week beforehand where I was seriously doubting myself).  The tummy tuck was just a nice added bonus.

But on the positive note, you've tackled soooo much.... this will be the cherry on the pie .  Many hugs to you and remember...you're definitely stronger than you thought you were were.  

Peggy-- hi!!  miss ya!!

mary625

PeggySull and Relocated--so glad you're back here, we've missed you!  Relocated: 2.5 years after the BMX, I'm finally scheduled for my DIEP on 9/24.  I wasn't in the mood for more surgery right away.  It was summer, my son was home and needed me to take him places, and that's what I did.  Now, I'm getting nervous about insurance possibly changing and my lymphedema is worsening which the surgeon says she can improve.  I think we all have varying degrees of PTSD and anxiety after treatment, and it takes varying amounts of time for it to improve and lessen.  The time will be right when your anxiety lessens.  

odie16

Relocatedtarheel and PeggySull, welcome back!! We have missed you both. Wishing you peaceful days ahead and hope to see you both at an upcoming lunch soon..

Does anyone have any issue if we do Carlyle in September (6th) and Clydes in October? As always, welcome other suggestions as well. 

PeggySull

Saw my MO yesterday and I need to find a physical therapist who works with post-chemo related disorders.  INOVA has a long waiting list.

Does anyone know of any GOOD physical therapists who do this kind of work.  Specifically, I am having pretty bad balance problems due to delayed onset peripheral neuropathy from the taxol I received during chemo.  Thanks for any help in this regard.

Peggy

MomMom

Peggy,  Do not know of such a PT, but hopefully someone here will.  So sorry to hear about your delayed neuropathy.  When did you finish the Taxol and when did symptoms first appear?  I've heard (but don't know if it's accurate) that you can get neuropathy up to a year post chemo. 

mary625

I don't know of any PTs that do this type of work (and had not heard of it before either), but I have been pretty happy with lymphedema treatment at Jackson Clinics and Virginia Hospital Center.  You might call and see if they have anyone.  

PeggySull

thanks for the replies!  I did find an experienced acupuncturist near. Gainesville and had my first treatment Saturday.  I can feel my toes a tiny bit more.  He did some for my anxiety and at the end of the 90 minute session I felt like I had had a super duper Valium.  He said we should try five more weekly sessions and if there is no improvement acupuncture is likely not going to work for me.

I will call Virginia Hospital Center and see if they know someone out my way.  Thanks!

Also, I had neuropathy from the get go when I finished Taxol, but it stayed the same for about a year.  Then it started to worsen.  This coincided with a 3-month trial of avastin that I discontinued for another reason.  Maybe this had something to do with the worsening. My MO seems clueless about this but in other ways she is great.  BTW, Although I exercise daily I even have some weakness in my legs, a sign of progressing neuropathy.  I have added just this week almost all the supplements recommended on the permanent neuropathy thread.

Hugs to all, 

Peggy

MomMom

Peggy, I had acupuncture treatments weekly all the way through Taxol, and hope to continue weekly through rads which I started a week ago.  I did it primarily to prevent neuropathy during Taxol, but I also iced religiously throughout, and so far, thankfully have no signs of it.  My acupuncturist is off Rt 50 in Fairfax and I will gladly give you his info if you want, but that's probably not convenient for you.  I also feel like I've been given a super relaxation pill when I leave!

 

PeggySull

thanks MOMMom,

I found someone I think is good but I wish I had iced during taxol.  Also, I really wonder if people who get taxol weekly rather than every two weeks in a dose dense form (done because I am triple negative) have a lower likelihood of getting neuropathy.  Would really like to find some research on that!  Does anybody know any research on this?  My MO said she'd seen neuropathy both ways but I didn't get the sense that she had looked into it too deeply.

Hugs,

Pegy

MomMom

Peggy, Not sure if that makes a difference, but would be good to know.  I'm also TN but my MO only did DD for AC, and 12 weekly for Taxol. Interesting how protocol differs. Hope the acupuncture really helps your neuropathy.  Take care.

placid44

Peggy,

I did weekly taxol and still got neuropathy.

mary625

I'd just like to know why some people get weekly Taxol and some dose dense.  I got the latter.  

MomMom

Mary,  Just curious where your MO is located? Mine is Mary Wilkinson in Fairfax. I notice that protocol differs in different parts of the country, but you might expect that.

mary625

I was at Georgetown Hospital when I had chemo.  I'm presently with Dr. Warren and was previously with Dr. Eng-Wong before she left.  If you were in the study going on, then you got weekly Taxol for 12 weeks but Prior to A/C.  That would have really sucked.  I don't think I could have gotten through that.  The saving grace for me was getting the A/C out of the way first.  

MomMom

Totally agree with you!!

odie16

Next luncheon is next Saturday September 6th at Carlyle. Please RSVP by Wednesday so I can make the reservation. Thanks!!!

MomMom

I'll be there!  Noon?  Hope to meet lots of you!

Paula

PeggySull

Odie,

Unless a truck runs me over, I'll be there.  Noon?  Where is Carlyle?  Is there more than one of them? Have missed you all!

Peggy

MomMom

Peggy, That's great - good to meet a fellow TN.  It's in Shirlington which is in Arlington.  There's only one, but its part of the Great American Restaurant chain.  Food is awesome!

mary625

I'll be there.  

odie16

And yes, at Noon..... 

Cuetang

I'm in!  

placid44

I will be there. Looking forward to seeing you all. Carlyle is five minutes from home!  Agree, great food.