Posted on: Mar 24, 2015 04:51PM
Okay, I have been mulling these procedures over for the last 4 years... and I want to know your outcomes --- The good, the bad and the ugly... Really. Please share here or message me. My goal is not to judge... I am just trying to make an informed decision and as with all newer procedures, it can sometimes be hard to do when there is not a ton of information out there - especially when there is risk involved. I don't post much, but I have been around here for a long time, so please don't think I am a newcomer here to stir the pot and I will not and hope others will not judge your decisions. I am really just in the information gathering stage... okay, well, I have been in the information gathering stage for years, but it seems only recent that people are starting to move forward with these surgeries. I am highly motivated by fear... LOL.... of crap that I totally can't control, so knowing all the pros and cons and weighing them out (after all, I am a Libra) is what works for me. Plus, it really does benefit everyone in the long run! All I know for sure is that if it weren't for women that were open and willing to share, I would not have the awesome reconstruction I have now, so I know how important this is! Thank you!
Posts 31 - 60 (75 total)
May 31, 2015 12:09PM ahdjdbcjdjdbkf wrote:
Thanks, Carol. This was my 5th surgery with drains and I really think this round just whooped my body. Having to work full time has meant I can barely drive home some days. BC, I came home and went running long-distance, to spin class, etc. I really am eating kind of the minimum I could eat and not be really tired and hungry or damage my metabolism. I think I'm at the lowest healthy very low-carb almost al organic diet I could be on. Yet my weight continues to climb and climb. I left spin class before it started today. I was ashamed and left.
May 31, 2015 12:36PM SweetHope wrote:
I don't understand why our metabolisms slow down; especially for you since you are so proactive on working off some excess weight. It must be so frustrating. But please don't think about the weight gain right now.
I am stressed and depressed about the 30 pounds I have added since dx. (But I have been very sedentary and spent the first month inside a Cheetos bag.). But everyone tells me not to worry over that right now...Just get thru dx and get the strength back. So I am passing that on to you...please don't distress over this. Just be proud of all you do for yourself and hopefully, the rewards will soon follow.
May 31, 2015 01:23PM Tomboy wrote:
I am pretty sure chemo by its lonesome, whacks our metabolism. Like you, Maria, I move. A LOT. But still my weight climbs. And my diet and activity levels were pretty good previously, but now, it is all I can do to keep my (over) weight steady at 25 lbs too much. I was succesful at bringing it down 8 pounds, but still, I don't like it, and all my sweeter clothes are waiting. I actually have fat clothes for the first time in my life, but refuse to buy too many of them. Glad you came back to let us know how you feel. I am hoping that the VLNT or LVA recovers, when you move more again, and that it is just a temporary setback for you. Here's hoping!
May 31, 2015 02:48PM carol57 wrote:
Maria, I can feel the ouch in your post, and it's such an understandable feeling. How about finding some good workout activity you can do at home, so you don't have to be self-conscious and can do several mini workouts during available hours, without the time and logistics to drive to the gym? I'm not thinking of this kind of exercise strategy to boost weight loss--or hold weight gain at bay, which it might of course help with. Nope, I'm thinking of the endorphins that flood the brain after we energize the body with exercise. You need some of those!
I bought a thing-y to put my bike on, so I can use it indoors. Now that our Michigan winter is almost over (I'm only half joking, it's really cold today!), I can ride outside, but I've come to enjoy pedaling while I have my iPad or a TV in view. So many apps are available, there's probably one that you could use to design a realistic exercise re-entry circuit for yourself. Making a trip to the gym feels like an all-or-nothing proposition, so just don't put yourself in a place where you're embarrassed to stop when you need to, or to be seen wearing chemo pounds. You'll get there over time.
May 31, 2015 09:57PM SlowDeepBreaths wrote:
Maria, you're not alone in the weight gain. Right now I am 45 pounds over my normal weight. Between the steroids during treatment, and the steroids after for another ailment, my weight just went crazy. I don't have lymphedema in my arm because I didn't let them take any nodes. But, I do have it in my leg from other surgeries. I agree with Tomboy, our metabolism just goes crazy after treatment.
Your body has been through so much within a short period of time with all of those surgeries. It needs some time to heal. You sound like a determined lady which will help get you back on track. I don't think any of us should lose hope.
Jun 1, 2015 01:46AM Nordy wrote:
Maria - you are not alone in the weight gain department! Since my hand flared in December, I have gained about 8 pounds! I have always been very active, but this put me into a downward spiral that took a good couple of months to crawl out of. I am back to doing most everything I love, even if I pay for it at the end of the day. I figure I pay for all my activities I anyway, including the most mundane (cleaning, cooking, etc), that there should at least be some fun involved. You will find a rhythm again - give yourself some time to recuperate and take care of you. Big hugs.
Jun 1, 2015 08:05AM kriserts wrote:
Maria, thanks for being honest about the LNT. Like Nordy, I've thought about it for years. About the weight gain--I found I gained weight after the whole chemo/cancer experience, and the stories about how weight gain because of menopause was inevitable really scared me. Seemed like I was puffing up like crazy. But a couple years after treatment, I dropped it, my weight stabilized and now I'm the weight I've always been. I'm an avid cyclist, so that helps. I was in Asia last year for a month cycling and was the thinnest I've ever been. So the weight gain might be temporary and in a while you'll stabilize.
Jun 7, 2015 09:57AM ahdjdbcjdjdbkf wrote:
I had a much better week with my VLNT results. Right now I feel confident in saying my Lymphedema is better than before surgery. I just had a full week of less swelling. That NEVER happened before surgery when I was having a busy week of work, errands, cleaning, exercise, etc. But this week I did. Hoping it is a sign of things to come.
Jun 7, 2015 03:52PM SweetHope wrote:
Mariasnow, that's great news!
Jun 8, 2015 01:59PM SlowDeepBreaths wrote:
So happy to hear that Maria. I hope it continues to get better everyday!!
Jun 9, 2015 11:16PM foreverhopeful wrote:
Other times when I have shared about my experience with VLNT, the discussion turns to all of the things that can go wrong. I hope I can just share my experience without being reminded of the risk I took:) I also know that with lymphedema there will always be a risk and I would rather not be reminded of it. I also know I prayed and prayed for God's wisdom about my decision, and He gave me peace in it. I do want to share my experience though, because I remember looking and looking for stories. I hope I can provide information for Nordy and others who are interested in the procedure.
I had my VLNT in February of 2012 at NOLA while having my reconstruction. I didn't know whether I would go through with it or not when I arrived, but had a lot of questions for the doctors. I knew that if I didn't do it then I might not elect to go through with another surgery. I also didn't know until I arrived that NOLA had changed from taking nodes from the DIEP procedure to taking them from the neck. I was not expecting a neck scar, but in the end I decided it was a fair trade for lymphedema. With God's strength I handled a stage IV diagnosis as best as I could, but developing lymphedema on my last day of radiation was about all I could handle. I know if you are reading this you understand the devastation as well, and my heart goes out to anyone who has a lymphedema diagnosis. My case was not severe, severe, (I'd say medium) and was oddly enough primarily in my hand. Dr. Trahan felt that the neck as the donor site did not carry a very large risk (and yes as I have been reminded there is a risk:)). I trusted him. Immediately, I noticed a difference after the surgery. My arm and hand were softer and the pain was gone. To this day I am doing well. I still wear my ring on my right hand, but I am free of my glove and sleeve during the day. I wear a Solaris at night and my garments when I fly. Although I just recently forgot it when I flew and was fine. I have had a few flare ups, but two to three massages have brought it back to my new normal. Also interesting to mention, is the therapist who gave me daily massages after my surgery saw many amazing results as well. Of course, I don't know how it is tracked down the road. Take myself for instance, I have never checked back in to document that all is well. I wish that someone (and maybe they are) would do a study to track that kind of data. That would make these kinds of decisions easier. Please let me know if you have any questions.
God bless you all!!!
Jun 10, 2015 01:49PM Nordy wrote:
Thank you so very much for sharing! I am so glad that you are doing well!
Jun 11, 2015 10:53PM ahdjdbcjdjdbkf wrote:
I will jump in and say I feel your pain on the boards of so many wanting to discourage us from the surgery. I had a flare-up that got me super down a couple of weeks ago but when it passed things were better. I can say without a doubt that on average day to day my arm is better than before surgery. The flare-ups seem to be primarily caused by a bad diet day that includes sodium. I'm back to spinning and yoga. My arm seems to flare-up during exercise but quickly reduce afterwards. Before surgery exercise made it swell and it stayed swollen. Today I am happy I had the procedure.
Jun 11, 2015 10:55PM ahdjdbcjdjdbkf wrote:
I had a good week with my arm being less swollen and I was able to get into some exercise and PT. I'm accepting that there will be ups and downs like before. So far the flare-ups seem to pass more quickly.
Jun 12, 2015 07:04AM carol57 wrote:
Maria and Forever, you ladies are about the best source of the much-needed progress updates that I know of. I'm so grateful that you're sharing both ups and downs, and as Forever said, it would be so helpful if there was indeed a good reporting system to learn about the wider body of experience. It seems like there are so many surgeons doing LE surgeries now, there should be enough cases to provide some robust anecdotal evidence of what's working, and what's not.
Forever, did your surgeon explain why the center switched from diep nodes to using the neck nodes?
Jun 12, 2015 04:46PM SlowDeepBreaths wrote:
I'm a firm believer that you should do what's best for yourself. I've made some treatment choices that I'm sure some wouldn't have - but in the end, I'm the one that has to live in my body.
Mariasnow, Sending you best wishes. I hope it continues to get better for you!!
foreverhopeful, your name says it all. Sending you best wishes too!!
Jun 13, 2015 11:47PM ahdjdbcjdjdbkf wrote:
Thanks. Tonight my Lymphedema wrist looks normal and I can see my wrist bone almost the same as on my other arm. I hadn't seen this for a long time prior to surgery. I continue to be hopeful that something good is happening this week.
Jun 14, 2015 11:36PM SlowDeepBreaths wrote:
That is great news maria. It sounds like you're making good progress!!
Jun 18, 2015 12:00AM runnergirl26 wrote:
Please keep us posted on how your are doing. I am glad to see that you have had some improvement. The last time I read your post you were really down because you had some bad days with increased swelling. I am keeping positive vibes coming your way. Thank you for venturing into an unknown that is really scary for some of us.
Jun 20, 2015 11:13AM Christine2000 wrote:
Mariasnow, my doctor told me it would be 3 to 6 months before I saw any real difference, and possibly a year before the new lymph nodes started to be truly effective. She predicted a 30 to 40 percent reduction for me. I am curious what your doctor told you?
Jun 24, 2015 06:04PM AussieElaine wrote:
Hi Nordy, just thought I'd let you know about my experience. I developed LE after my third round of chemo. To say I was devastated is an understatement. Anyway I started researching and was considering LNT when I heard about LVA on BCO. Somehow I then discovered a website "Healthunlocked" and joined the LSN forum. A few Surgeons have posted and notably Professor Dominic Furness and Mr Alex Ramsden who are both consultant Ps and specialise in super microsurgery at the Oxford Lymphoedema Practice in Oxford England. They have found that when they both work simultaneously they have had really good results when performing LVA surgery. I emailed their clinic for more information and was quite amazed at how quickly they responded. I also spoke to my BS in Australia who voiced some concerns so I emailed the clinic and again they responded really quickly and even offered to talk with BS. They also sent a heap of attachments to help me. Long story short as I had already planned a trip to the UK to visit family, I thought well I have nothing to lose ( except a pile of money) and made an appointment to see them. They also provisionly booked a theatre date for me should I be a candidate for the surgery. I had the ICG test and was very surprised to see that there was a new pathway deep into upper arm up to the lymph nodes in my neck. Just a pity that it hadn't kept going:) I had the surgery last week under local anaesthetic which took just under 5 hours and they did an amazing 16 joins. There was no pain and I didn't even need any pain meds. Now all I need is more patience as they told me that improvement can take 6 months or more. At the very least it should not get any worse. They will be doing follow up by SKYPE how cool is that!! I have had to pay myself as my insurance doesn't cover overseas but my wonderful DH has said he would pay double if it helped me, he's also paid for me to fly business class so it will be easier for me. So don't give up hope 😊
Jun 25, 2015 04:17AM Nordy wrote:
Elaine --- Thank you, thank you! Your sharing here is not just helping me but so many people! I appreciate it so much! I have not given up hope yet and am making headway... Of course, it seems that for every step forward I take at least a half step back as my insurance is changing July 1... and this is after making a TON of headway with my current insurance! But, things are progressing... I just don't have much to report until I have a definitive plan in place! (But I am getting there!!!)
Jul 6, 2015 12:54PM ahdjdbcjdjdbkf wrote:
Checking-in. Well I have had my ups and downs and it seems the holiday weekend put me into a flare-up despite being vigilant with my movement and MLD. I am questioning if some of the supplements and./or sodium content in food set me off. As far as what I can expect, my surgeon felt that I will be able to live without compression most of the time, my flare-ups will be less frequent and not as severe, and flare-ups can turn around without major intervention. Because my swelling was 20% pre-surgery, my surgeon felt that one possible good outcome for me would be that I don't end up even worse - since most people do.
Jul 6, 2015 10:39PM Katiejane wrote:
Maria, Did I read the end of your post correctly-that most people end up in worse condition than BEFORE their LNT????? Your surgeon agreed with that??? Please clarify. Thank you, katiejane
Jul 8, 2015 01:40AM Nordy wrote:
KatieJane --- I am thinking that Maria meant that a benefit from her surgery would be that her lymphedema would not progress, as most people without the surgery progress over time. Maria --- correct me if I am wrong? This is really my hope for surgery -- when I eventually do it--- that if nothing else, I could prevent further progress. Despite my best efforts... and believe me, i wrap nightly, compress the other hours of the day except when showering and take all precautions to prevent infection--- and despite all of this, here I am with an exacerbation and progression. Imagine if I chose to ignore it? My arm would be ginormous...
Sep 29, 2015 01:56PM ahdjdbcjdjdbkf wrote:
My lymphedema is better overall but it is not a magic bullet. I have better skin quality, less swelling in my back and chest, and less swelling in my wrist. My mid and upper arm swelling persists. I do believe the surgery must have helped with my condition not worsening. I just flew back and forth to Montana and literally climbed a mountain while I was there. I flew and climbed without a sleeve without any worsening of symptoms. Something good is definitley happening. I made my choice about the sleeve beacuse I'm talking to a top researcher whose results aren't published yet. Please don't anyone chastise me in this forum for reaching out to the top experts on my own and following their advice using my own free will. The info shared with me was shared responsibility side by side with current published research and I made my choices. I also know that the Ashtanga Vinyasa yoga I am doing is helping immensely. There is always a noticeable difference after each class with a decrease in swelling. I'm not alone coming to this conclusion. I share these things to spread hope...not to be chastised or corrected. It is getting old. We all have free will to chose the treatments and therapies we choose. What I'm sharing is real and first hand for ME.