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November 2, 2012 at 1:07 pm #20737
Has anyone saw this movie yet?
He has treated EVERY type of cancer but mostly terminal inoperable ones. Wow, I know I wish I had heard of him before I got dissected:(
A lot of pain and time lost would’ve been prevented. This is an amazing movie and when I saw the dates, it turned my stomach to know how long this treatment has been around.
GaylaNovember 2, 2012 at 1:27 pm #57338
An update to my current condition a well – I am receiving myofacial therapy for lymphdema and yes it is HORRIBLE- but the therapy is wonderful . Compression garments arrive today- not able to return to work and complete LND was August 29- so it’s been awhile. Medical oncologist visit ( new dr) is scheduled for next Tuesday – November 6th- if you recall I went straight from dermatologist after diagnosis into surgery so we skipped the medical oncologist and went straight to surgical oncologist who was WAY too aggressive with this as nothing was found in SNB that could be determined melanoma- but we went with her decision anyway to do the complete LND- I explain this as ignorance because I did not have the knowledge I do today and we were so rushed into things and I see this will affect me the rest of my life… The lymphedema. The new doctor I see next Tuesday is on my surgeons team so I am prepared for an aggressive treatment plan which I will decline. Nothing there to shoot at or zap at according to my PET and all reports.
I basically have missed 3 months of my 6 year old sons life when all that was really required was removal of the tumor through WLE- I bounced back from that in 10-14 days then was put through LND. And all nodes in right groin are gone – I suppose that is why I developed lymphedema is that NO nodes were left at all:(
Will keep you posted!
My prayers are with all of you affected by the hurricane- God bless.
GaylaNovember 2, 2012 at 8:51 pm #57339
I’m not sure there is such a thing as being too aggressive with melanoma. It’s such a sneaky beast.
The missing lymph nodes definitely are the reason why you developed lymphedema. They no longer are there to move the fluid out of your affected leg. I’m glad you are seeing someone to address the swelling and that you have compression garments on order.
The compression garments will make a huge difference. They definitely are a pain in the neck to get on but they feel really good once they’re on.November 7, 2012 at 1:42 am #57340
I had all the nodes removed in my left groin. I also suffer from lymphedema so I feel your pain.
Its a shame that it was done unneccessarily. Lymphedema is a very difficult thing to live with. I was unable to go back to work because of it. Yes, therapy and compression garmets help but even with that it is a battle every day for me.
My heart goes out to you with having a little one. My children are grown now so it was easier.
You will probably have some days that are better than others. You learn to adjust your life around it the best that you can. Hoping things get better for you soon.
Shirley ZNovember 7, 2012 at 3:27 am #57341
So sorry Shirley,
I am afraid that will be my case as well, unable to return to work. I saw the medical oncologist today and he said no treatments are necessary- only watch and wait! So that was a blessing:)
The staging of mine was done by 3 doctors- 2 of which staged me IIA and 1 staged me at IIIA- the last one was my surgeon and it was her decision to remove the nodes, my medical oncologist I met with today made me 2 charts – 1 of a IIA – 1 of a IIIA – with the expectancy of years and recurrence rates etc.
He decided chest x-rays were enough for me along with skin scan by my dermatologist, I live a very healthy lifestyle and am active up until the lymphdema, the doctor says that must be my main concern right now because my knee will not straighten and therapy is the only answer but I have severe damage to nerves and muscles- my cuts are long and deep – directly beside the knee on outside of leg 6-8 inches and mid thigh to belly button in front of leg- basically my leg looks gutted which is the words one nurse used.
As a business owner, I can see there is no way I can return to my business, a restaurant , and stay on my feet, running it properly. We will have to make some life changing decisions as a family now.
Our family is used to 2 incomes and that is going to be difficult to overcome.
The main thing is, I have 85-95 chance of 5 year survival so I am loving those numbers:). My 6 year old doesn’t know WHAT we are celebrating , he just knows we are celebrating
. Perhaps he thinks its the election:) lol
He did mention Interferon but said I would havev to sacrifice a year of my life for something very controversial as to whether it increases survival- I immediately declined, my son is 6. That is not an option.
I have my prayer warriors praying this lymphdema does not leave me disabled – although I know that is highly possible and makes me sad
Next appointment with oncologist is 3 months away- therapy tomorrow! Therapy is my hope at this point!
GaylaNovember 8, 2012 at 12:16 am #57342
Therapy worked wonders for me. I hope it does for you as well.
I think it probably would be very hard to return to a job where you are constantly on your feet. I have the same problem. Sitting is a problem too. If I don’t keep it elevated when I’m sitting it starts to swell and throb. And when you sit too long it stiffins up. I am constantly up and down.
The weather plays a big part in how I feel also.
It is definitely a life style change. You just do the best you can. I pretty much know that on the day I go grocery shopping I will probably be miserable that night. I’m just happy I can manage to get through the store now in one visit. I used to have to make 2 trips lol.
After living with it for 6 yrs now, I know exactly what flares it up and what to expect.
Being able to enjoy my family and grandkids makes it a lot more tolerable.
Wishing you well,
Shirley ZNovember 9, 2012 at 2:40 pm #57343
Shirley are you using a pump? My neighbor has leg lymphedema and swears by the pump that she uses.November 9, 2012 at 3:39 pm #57344 Hi Linny,
When I first started the therapy 6 yrs ago my therapist did not recommend the pump. They were rather new then and she felt it woukd leave too much fluid in the belly. The only thing I have ever know is the manual drainage and wrapping.
I have heard several people comment on here about how nice the pump is. I may reconsider looking into it.
Shirley ZNovember 9, 2012 at 9:20 pm #57345
I am doing myofacial therapy along with my therapy for swelling – has anyone ever tried this technique before?
So far I have had 2 treatments and can tell a difference already. The garments are great, but not a cure:(
Does anyone’s insurance cover their therapy?
I will have to travel an hour to lymphdema therapy where my insurance would cover it so I’m having to pay for all therapy out of pocket:(
Give me your input on the myofacial if anyone has tried it!
GaylaNovember 9, 2012 at 11:47 pm #57346CRodyParticipant
Gayla, you are in my prayers.
Shirley, if you are talking about a wound-vac like the ActiVac, I highly recommend it. I have an open wound on the bottom of my foot, about 3”X 4”X ½“and can’t put any pressure on it. I have been using the ActiVac since I was in the hospital. The wound care nurse comes in three times a week to change the dressing. It is quite painful when he pulls the old dressing off, but he squirts some lidocaine jell on the wound (that and 2 oxycodone an hour before he gets here) then all is good. I also take Juven, a cell growth drink (tastes like tang) and whey protein powder twice a day to promote cell growth and healing. My original wound was about a cm deep and in less than three weeks, I have put on about 5-6 mm of fresh meat at the wound. I would really suggest a wound-vac to anyone who can get one.November 10, 2012 at 12:30 am #57347
I personally don’t recall anyone using the myofacial therapy along with the lymphedema therapy. Maybe others are familar with it.
I did the MLND (manual lymph node drainage). My insurance paid 80% of it. I went 5 days a week for one month. The last week they taught me how to do it at home. Its been a long time since I was taught so I’m sure things may have changed since then.
I’m really surprised your insurance won’t cover the lymphedema therapy. Do you have a script from your onc? My therapist required me to have an ultrasound done before I started therapy just to make sure there were no clots.
Good Luck to you! I know how painful the lymphedema is.
Shirley ZNovember 10, 2012 at 12:40 am #57348
How are you doing?
Actually we were referring to a pump that is used for lymphedema. Gayla and I both had groin LND’s.
I’m glad your wound is healing nicely. That’s a tough spot to have surgery on.
Keep in touch!
Shirley ZNovember 10, 2012 at 3:35 am #57349
Yes my insurance will pay for it if I drive the hour away to the therapists that accept insurance, I live in the foothills of the Appalacians, very remote area- 2 hours north of Atlanta- 30 minutes from NC – 10 min from SC – right there in that tiny corner of GA that starts the Smoky Mt….
We have 1 Lymphdema therapist who also does the myofacial with the treatments and she does not accept the insurance:(
Both hospitals here send patients either to Greenville SC – 85 miles or Gainesville GA will have a therapist certified mid November and she promised I would be the first appt so so in the meantime I must use what I can get.
I am using the garment, TENS unit, massage pillow, light therapy…. Anything and everything:)
The lady I am going to now sees me once a week and the next visit is Tuesday and she said she was putting the machine on me Tuesday.
I see some improvement but must wear the garment constantly:(
Until I can get the effective treatment, probably more than once a week, I don’t foresee a complete recovery at this point- it’s been 10 weeks now since the LND.
I am not sure why she is doing the myofacial either… It focuses on the 7 points of your body, not really the leg, lol, really confusing.
GaylaNovember 10, 2012 at 2:49 pm #57350
That’s too bad that you have to drive that far to be covered. The last thing you want to do when your lymphedema is that bad is to sit in a car for an hour. Especially if you are driving and you can’t elevate your leg.
I seem to remember that i had to make quite a few phone calls before i found a therapist that was closeby to me also. And we are not in a remote area. The place I had surgery had a lymphedema clinic but I wanted to stick closer to home.
I was not allowed to remove my wrappings during my therapy. I remember taking a bath with one leg hanging out of the tub. I was so happy when that month was over.
Have a good weekend Gayla. I hope you get some relief soon.
Shirley ZNovember 10, 2012 at 4:41 pm #57351
Gayla, have you tried using the search feature on The National Lymphedema Network to see if there are any treatment centers in NC and SC that are close to you that will accept your insurance? http://www.lymphnet.org/resourceGuide/treatmentCenters.htm ” class=”bbcode_url”> http://www.lymphnet.org/resourceGuide/treatmentCenters.htm
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