Dermatofibrosarcoma protuberans (DFSP)
Comments
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How are you Keribstar said:Keri's Mohs
Its good you responded just now JC before Keri goes for her Mohs and receives her result the day before on the 23rd. You said some things that were benefitial,I learned something too, I did'nt know what the super glue (ha ha) was called until you gave
it a name Permabond. I did'nt have stitches either, that would have left more marks on my face and I already have enough going on there without stitch marks.
Keri,we will be thinking of you tomorrow and the next day while you hear your results and
also go for your Mohs,this too shall pass. One of my daughters said something so simple to
me while I was going through the procedures and feeling kinda low,"Dad", she said "take it a day at a time, and sometimes take it just an hour at a time" in other words don't worry about tomorrow for tomorrow will worry about itself,each day has enough trouble of its own.What you are doing Keri is so important so just relax a bit,take a deep breath and walk on,these trials in life are hard and we ask ourselves "Why Me" but through these trials we become a stronger person in many ways when we rise to the challenge and keep going. Please let us know how you're doing when you're ready okay.
bstar
It has likely been an emotional and busy time for you this last week Keri and our thoughts and Prayers are with you. I must give you a short note which you may find interesting. I was stationed in Cornwallis in 1961 as a young 17 yr. old teenager still wet behind the ears doing my bootcamp training with the Canadian Navy so I have a heart for your area, Annapolis Valley where the apples grow,Digby with its extremely high and Low tides and of coarse Halifax where our Ships are docked,its a beautiful place Nova Scotia,I felt very much at home there.
So there's a bit of personal history which by the way dates me Ha Ha, I'm a proud Canadian
having done my duty for our country as a young Lad and my roots go deep from coast to coast.
bstar0 -
DFSP Survivorbstar said:How are you Keri
It has likely been an emotional and busy time for you this last week Keri and our thoughts and Prayers are with you. I must give you a short note which you may find interesting. I was stationed in Cornwallis in 1961 as a young 17 yr. old teenager still wet behind the ears doing my bootcamp training with the Canadian Navy so I have a heart for your area, Annapolis Valley where the apples grow,Digby with its extremely high and Low tides and of coarse Halifax where our Ships are docked,its a beautiful place Nova Scotia,I felt very much at home there.
So there's a bit of personal history which by the way dates me Ha Ha, I'm a proud Canadian
having done my duty for our country as a young Lad and my roots go deep from coast to coast.
bstar
My husband was diagnosed with DFSP in December 2004. His case was on the left cheek and the treatment was Gleevac and surgery. At that time, Gleevec was an experimental drug. At that time, I could not find ANY cases or support networks for DFSP. Needless to say it was a long, emotional and painful 5 years but last April he did reach 5 years without any reoccurance. The ONLY reason I researched DFSP is because my son (15 years) is now interested in doing a school research project on the cancer his dad struggled with for so long. It is AMAZING and ENCOURAGING how far medicine has come in just 6 years. I wasn't the recipient of this cancer but I was a spouse. My thoughts and prayers go out to all of you... Keri especially. Please let me know if I can help in any way.
EKurila0 -
What should follow up care look like
I am 20 months post MOHS.
I was diagnosed by a local dermatologist who immediately did a excision with very small margins. Two weeks later he realized that he hadn't gotten it all and referred me to UCSF surgeons who recommended MOHS.
They took a 4 inch circle 3/4" deep out of my left shoulder and covered it with a skin flap.
After the immediate post surgery appointments follow up care was to be performed by my original dermatologist.
I have been twice. And both times he has simply looked at my back, poked it and told me to come back in 6 months. He obviously has never seen this before and I don't think he knows what he's looking for.
I am having quite a bit of pain still and no one seems to be able to tell me why, or seem concerned.
I want to see a different doctor and get some answers. I hear that a lot of you have received CAT and PET scans as part of your follow up care, do you know if that's normal?0 -
Lab Rat for Gleevecekurila said:DFSP Survivor
My husband was diagnosed with DFSP in December 2004. His case was on the left cheek and the treatment was Gleevac and surgery. At that time, Gleevec was an experimental drug. At that time, I could not find ANY cases or support networks for DFSP. Needless to say it was a long, emotional and painful 5 years but last April he did reach 5 years without any reoccurance. The ONLY reason I researched DFSP is because my son (15 years) is now interested in doing a school research project on the cancer his dad struggled with for so long. It is AMAZING and ENCOURAGING how far medicine has come in just 6 years. I wasn't the recipient of this cancer but I was a spouse. My thoughts and prayers go out to all of you... Keri especially. Please let me know if I can help in any way.
EKurila
So... I'm the husband.
And I was the first patient to be experimentally treated with Gleevec for the onset of a cancer. Gleevec had been used successfully for the re-occurance of cancer... at that time. Remember that DFSP is easily treatable with surgery (if caught quickly)... grows slowly... generally does not matastisize... and is not life-threatening. In my case, an idiot skin doctor missed diagnosed me and the turmor grew to unusual size resulting in them cutting off the right side of my face (along with muscle and nerves) below the eye. For those that are old enough to remember that old TV program "The Six Million Dollar Man" with Lee Major... I'm the $600,000 Man. It was an incredible reconstructive surgery with donor parts from various areas of my body.
In my case, Gleevec shrunk my tumor by about 25% to the surprise of everyone involved. However, due to the fact that cancer leaves microscopic "footprints"... they ended up cutting about the same amount had they not used the Gleevec. However, they learned alot and it gave me the time I needed to prepare for a 12 hour surgery that I might not have survived... or might not have survived well. Know too that Gleevec has side effects that are tolerable, but not pleasant.
The key to picking a great surgeon is finding someone with extensive experience cutting in the area of your cancer. Essential to a good outcome is absolute intimate knowledge of the nerves, muscles and tissues surrounding the sarcoma. As this is a rare cancer, there are few "experts". One of a small handful of such experts is Dr. Bruce Haughey at the Siteman Cancer Clinic. Siteman is a premere instituion and Bruce is the best. He is a thoughtful and reflective surgeon that is collaborative in his practice. His collaboration with the radiologists and drug therapist at Siteman was key to the recommendation to try the Gleevec experiment... avoiding radiation therapy. And, his skills are so good that we did not need a plastic surgeon on the team. I have had plastic surgeons review the results and the best of them are simply amazed at the outcome and Bruce's skill.
Get the best surgeon you can. Bruce's staff are kind, incredible helpful and will make a recommendation for a skilled surgeon near you. If you can, use Dr. Bruce Haughey. Call them:
Siteman Cancer Center
www.siteman.wustl.edu
660 South Euclid Avenue
St Louis, MO 63110-1010
(314) 362-56540 -
Lab Rat for Gleevecekurila said:DFSP Survivor
My husband was diagnosed with DFSP in December 2004. His case was on the left cheek and the treatment was Gleevac and surgery. At that time, Gleevec was an experimental drug. At that time, I could not find ANY cases or support networks for DFSP. Needless to say it was a long, emotional and painful 5 years but last April he did reach 5 years without any reoccurance. The ONLY reason I researched DFSP is because my son (15 years) is now interested in doing a school research project on the cancer his dad struggled with for so long. It is AMAZING and ENCOURAGING how far medicine has come in just 6 years. I wasn't the recipient of this cancer but I was a spouse. My thoughts and prayers go out to all of you... Keri especially. Please let me know if I can help in any way.
EKurila0 -
Commonalitiesmmindlin said:Lab Rat for Gleevec
So... I'm the husband.
And I was the first patient to be experimentally treated with Gleevec for the onset of a cancer. Gleevec had been used successfully for the re-occurance of cancer... at that time. Remember that DFSP is easily treatable with surgery (if caught quickly)... grows slowly... generally does not matastisize... and is not life-threatening. In my case, an idiot skin doctor missed diagnosed me and the turmor grew to unusual size resulting in them cutting off the right side of my face (along with muscle and nerves) below the eye. For those that are old enough to remember that old TV program "The Six Million Dollar Man" with Lee Major... I'm the $600,000 Man. It was an incredible reconstructive surgery with donor parts from various areas of my body.
In my case, Gleevec shrunk my tumor by about 25% to the surprise of everyone involved. However, due to the fact that cancer leaves microscopic "footprints"... they ended up cutting about the same amount had they not used the Gleevec. However, they learned alot and it gave me the time I needed to prepare for a 12 hour surgery that I might not have survived... or might not have survived well. Know too that Gleevec has side effects that are tolerable, but not pleasant.
The key to picking a great surgeon is finding someone with extensive experience cutting in the area of your cancer. Essential to a good outcome is absolute intimate knowledge of the nerves, muscles and tissues surrounding the sarcoma. As this is a rare cancer, there are few "experts". One of a small handful of such experts is Dr. Bruce Haughey at the Siteman Cancer Clinic. Siteman is a premere instituion and Bruce is the best. He is a thoughtful and reflective surgeon that is collaborative in his practice. His collaboration with the radiologists and drug therapist at Siteman was key to the recommendation to try the Gleevec experiment... avoiding radiation therapy. And, his skills are so good that we did not need a plastic surgeon on the team. I have had plastic surgeons review the results and the best of them are simply amazed at the outcome and Bruce's skill.
Get the best surgeon you can. Bruce's staff are kind, incredible helpful and will make a recommendation for a skilled surgeon near you. If you can, use Dr. Bruce Haughey. Call them:
Siteman Cancer Center
www.siteman.wustl.edu
660 South Euclid Avenue
St Louis, MO 63110-1010
(314) 362-5654
MMINDLIN: I beleive you and I have some things in common which I'd like to discuss with you
if you're willing.First I'm a very active and healthy 65,I walk 40 minutes a day every day.
If you have read some of my posts you would know it was my left cheek where the DFSP showed
up. The left main facial nerve and parotid gland are gone along with muscle tissue.
The area is fairly large approaching the size of a hardball baseball.My reconstructive surgery was also like yours 12 hrs.under general anestetic and 5 hours the previous day for the Mohs procedure.The donar area was my left leg from knee to thigh,nerves,muscle,and the skin tissue, as well as a vein from my left foot.The surgeons implanted a sling of muscle taken from my leg so my jaw won't sag over time and they did a nice job,the contour is good. When all is said and done I am very healthy now,my leg is as strong as ever,(I ride a Goldwing Touring Motorcycle),and the post Lab report and follow visit was excellent, I go for my 6 month in April.My only struggle is with the colour of the flap, it is white compared to skin tissue on my face and I've been using some makeup to try to blend it in and look more natural which is not so easy. I've tried self tanners which help some and have tried to find the right cosmetic product to match,they all seem brown and my natural skin is pink with a reddish tinge.
Tell me about your experience with this post surgery problem and the effects of skin tones,scar lines and so forth this is something that we deal with every day but not much is mentioned. The majority of individuals can hide their scars or flaps etc. but you and I are faced(no pun intended) with a very visible situation and we need to talk about it.
I welcome your thoughts,ideas,and soforth. For a man especially an outdoors X Navy guy and
sort of matcho as well using makeup was like a blow to my pride and ego it was'nt manly,I'm being honest here, so I'm interested to hear what you a survivor like myself has to say about this and how you've dealt with skin tones or if you even have the same problem,I suspect you do by reading through your post carefully.
bstar0 -
skin tonesbstar said:Commonalities
MMINDLIN: I beleive you and I have some things in common which I'd like to discuss with you
if you're willing.First I'm a very active and healthy 65,I walk 40 minutes a day every day.
If you have read some of my posts you would know it was my left cheek where the DFSP showed
up. The left main facial nerve and parotid gland are gone along with muscle tissue.
The area is fairly large approaching the size of a hardball baseball.My reconstructive surgery was also like yours 12 hrs.under general anestetic and 5 hours the previous day for the Mohs procedure.The donar area was my left leg from knee to thigh,nerves,muscle,and the skin tissue, as well as a vein from my left foot.The surgeons implanted a sling of muscle taken from my leg so my jaw won't sag over time and they did a nice job,the contour is good. When all is said and done I am very healthy now,my leg is as strong as ever,(I ride a Goldwing Touring Motorcycle),and the post Lab report and follow visit was excellent, I go for my 6 month in April.My only struggle is with the colour of the flap, it is white compared to skin tissue on my face and I've been using some makeup to try to blend it in and look more natural which is not so easy. I've tried self tanners which help some and have tried to find the right cosmetic product to match,they all seem brown and my natural skin is pink with a reddish tinge.
Tell me about your experience with this post surgery problem and the effects of skin tones,scar lines and so forth this is something that we deal with every day but not much is mentioned. The majority of individuals can hide their scars or flaps etc. but you and I are faced(no pun intended) with a very visible situation and we need to talk about it.
I welcome your thoughts,ideas,and soforth. For a man especially an outdoors X Navy guy and
sort of matcho as well using makeup was like a blow to my pride and ego it was'nt manly,I'm being honest here, so I'm interested to hear what you a survivor like myself has to say about this and how you've dealt with skin tones or if you even have the same problem,I suspect you do by reading through your post carefully.
bstar
So... as all my good friends said to me after the surgery... " you're just a little more ugly".
I have the same white flap from my fore arm. Doctor said he could dye it to better match the rest of my skin, but I was not keen on taking in dyes. Intuitively believe it ain't healthy and there will never be a "match". I am reminded every day that I am disfigured... I have constant discomfort... and I lack some functionality. But, I'm alive and I will not let this get me down, completely... although I do have my "days" when I just want to give up and go away. Nor, do I want to be a "survivor" forever defined by one event in my lifetime. And, I do not want a "survivor's" mentality. It's a constant struggle that I will never "win"... but I can move on... and I would hope you can as well.0 -
Follow upaliza said:What should follow up care look like
I am 20 months post MOHS.
I was diagnosed by a local dermatologist who immediately did a excision with very small margins. Two weeks later he realized that he hadn't gotten it all and referred me to UCSF surgeons who recommended MOHS.
They took a 4 inch circle 3/4" deep out of my left shoulder and covered it with a skin flap.
After the immediate post surgery appointments follow up care was to be performed by my original dermatologist.
I have been twice. And both times he has simply looked at my back, poked it and told me to come back in 6 months. He obviously has never seen this before and I don't think he knows what he's looking for.
I am having quite a bit of pain still and no one seems to be able to tell me why, or seem concerned.
I want to see a different doctor and get some answers. I hear that a lot of you have received CAT and PET scans as part of your follow up care, do you know if that's normal?
ALIZA: First I would say follow your instincts with this,we've seen misdiagnosis,we've seen doctors passing it off as nothing, we've seen doctors who did'nt know anything about DFSP and were likely too proud to admit they did'nt know. I have the utmost respect for the doctors and the medical profession, and if it was'nt for them I just may not have survived,however we need to be intelligent and not willing to sit back if things don't seem correct.Its your right to seek a second opinion and have peace of mind.
Myself,I am going for the 6 month checkup in April. I asked the Doctor (my reconstructive surgeon)if I should get a CT Scan or an Ultrasound prior to the visit so we can see what
the area looks like now, he said no it was'nt necessary, the physical inspection and his
verbal consultation will tell him what he needs to know, I trust him,he's the one who knows
exactly what was done,how the area was repaired,every muscle,every fiber,vein,tissue.
He knows exactly what it should look and feel like after 6 months,he's done hundreds of these cases so I trust his intelligence and wisdom. If I had pain I would be insisting
on more comprehensive testing for my own peace of mind.
There were no answers given here but I hope what I've stated will give you some idea how
you should approach your peronal concerns and make a judgement call for your own particular
surgery and follow up exam.Please feel free to comment and keep in touch through this medium.
bstar0 -
Zooki how are you?bstar said:Diagnosis
Zooki: Your story was well worth sharing. It seems to be common for physicians to misdiagnose DFSP and they most likely have never heard of it.What is so sad and aggravating is they should be refering their patients to a dermatologists when they don't know what it is they are looking at and they are failing us in that way.A Dermatologist is specialized in the field and knows often just by appearance what is involved and will do the necessary tests.
You are now in the right hands,Mohs surgeons and reconstructive surgeons and thats where you need to be, not back there worrying and being shrugged off.How many times I've heard someone
say they went with their instincts and they were right,but we also tend to trust a doctors opinion,they are the doctors and suppose to know,right, but with rare things like DFSP not so.
About skin grafts, you don't know yet if this will be required,there are several technics that
are used to close the area.Never the less with plastic surgery these days skin grafts are
used but very succesfully. I did'nt have one suture in my face or left upper leg (Donar area)
and everything healed up nicely for me,thats the beauty of plastic surgery.
I wish you well my friend,keep in touch,I will be thinking of you and also Kerri Roo, and JC
who I've posted comments with as well.We can benefit each other through experience,knowledge,
and our comments,who better to speak out from a laymans point of view than someone whose been there already.
-bstar-
We are hoping all is well for you after your MOHS at the end of January.Let us know
if you are able as a follow up to your previous post, okay.
-bstar-0 -
skin tonesbstar said:Commonalities
MMINDLIN: I beleive you and I have some things in common which I'd like to discuss with you
if you're willing.First I'm a very active and healthy 65,I walk 40 minutes a day every day.
If you have read some of my posts you would know it was my left cheek where the DFSP showed
up. The left main facial nerve and parotid gland are gone along with muscle tissue.
The area is fairly large approaching the size of a hardball baseball.My reconstructive surgery was also like yours 12 hrs.under general anestetic and 5 hours the previous day for the Mohs procedure.The donar area was my left leg from knee to thigh,nerves,muscle,and the skin tissue, as well as a vein from my left foot.The surgeons implanted a sling of muscle taken from my leg so my jaw won't sag over time and they did a nice job,the contour is good. When all is said and done I am very healthy now,my leg is as strong as ever,(I ride a Goldwing Touring Motorcycle),and the post Lab report and follow visit was excellent, I go for my 6 month in April.My only struggle is with the colour of the flap, it is white compared to skin tissue on my face and I've been using some makeup to try to blend it in and look more natural which is not so easy. I've tried self tanners which help some and have tried to find the right cosmetic product to match,they all seem brown and my natural skin is pink with a reddish tinge.
Tell me about your experience with this post surgery problem and the effects of skin tones,scar lines and so forth this is something that we deal with every day but not much is mentioned. The majority of individuals can hide their scars or flaps etc. but you and I are faced(no pun intended) with a very visible situation and we need to talk about it.
I welcome your thoughts,ideas,and soforth. For a man especially an outdoors X Navy guy and
sort of matcho as well using makeup was like a blow to my pride and ego it was'nt manly,I'm being honest here, so I'm interested to hear what you a survivor like myself has to say about this and how you've dealt with skin tones or if you even have the same problem,I suspect you do by reading through your post carefully.
bstar
Bstar,
Not sure if my reply was helpful... and I don't discount your concerns. I can't keep up with all the various blogs sites... so feel free to email me directly at michael4864@gmail.com if you wish more (private) conversation.
mmindlin0 -
I have been so busy at work,bstar said:Keri's Mohs
Its good you responded just now JC before Keri goes for her Mohs and receives her result the day before on the 23rd. You said some things that were benefitial,I learned something too, I did'nt know what the super glue (ha ha) was called until you gave
it a name Permabond. I did'nt have stitches either, that would have left more marks on my face and I already have enough going on there without stitch marks.
Keri,we will be thinking of you tomorrow and the next day while you hear your results and
also go for your Mohs,this too shall pass. One of my daughters said something so simple to
me while I was going through the procedures and feeling kinda low,"Dad", she said "take it a day at a time, and sometimes take it just an hour at a time" in other words don't worry about tomorrow for tomorrow will worry about itself,each day has enough trouble of its own.What you are doing Keri is so important so just relax a bit,take a deep breath and walk on,these trials in life are hard and we ask ourselves "Why Me" but through these trials we become a stronger person in many ways when we rise to the challenge and keep going. Please let us know how you're doing when you're ready okay.
bstar
I have been so busy at work, much too busy, that I haven't posted for a few weeks. I hope that Keri is doing well and I hope that your check up will go well, too, bstar. How have you been feeling? The permabond certainly helped me, too, although it still is an adjustment, to say the least. The internal stiches and tissue feel heavy from time to time, but I am moving about fairly well. I am still getting tired more quickly than I think I should, but I am probably doing much too much!
Let me know how things go for you.
JC0 -
Normal Living againunknown said:I have been so busy at work,
I have been so busy at work, much too busy, that I haven't posted for a few weeks. I hope that Keri is doing well and I hope that your check up will go well, too, bstar. How have you been feeling? The permabond certainly helped me, too, although it still is an adjustment, to say the least. The internal stiches and tissue feel heavy from time to time, but I am moving about fairly well. I am still getting tired more quickly than I think I should, but I am probably doing much too much!
Let me know how things go for you.
JC
Thanks for your latest post JC I've been concerned about Keri too,she has'nt posted since her MOHS etc. Hope all went well for her. I'm doing fine and carrying on with my usual very active life of outdoor activities. There was that period of apprehension that lasted
for about 4 or 5 months but it seems to have subsided now. Waking up every morning I feel
the same as the day before,nothing physically changes so I'm more relaxed and at peace
now,I can live with this. There has always been a bit of tightness around my skin graft
when I move facial muscles but thats understandable.The facial muscles move in different ways than before because they are different muscles grafted in so I've been trying to
teach my brain how to control these new muscles,its like learning to walk again.With
a radical change in muscles and facial nerves I don't think even the doctors can predict
what the final outcome will be so I take it upon myself to experiment with muscle control,maybe some of the things I can do they did'nt think possible,the human body is
a fasinating thing and how the mind can adapt to change if allowed to learn new ways.
I'm riding my charished 1985 Goldwing Limited Edition Touring Motorcycle again if that is an indicator of my progress. Take care,it was good to hear from you again.
bstar0 -
Forearm Flapmmindlin said:skin tones
So... as all my good friends said to me after the surgery... " you're just a little more ugly".
I have the same white flap from my fore arm. Doctor said he could dye it to better match the rest of my skin, but I was not keen on taking in dyes. Intuitively believe it ain't healthy and there will never be a "match". I am reminded every day that I am disfigured... I have constant discomfort... and I lack some functionality. But, I'm alive and I will not let this get me down, completely... although I do have my "days" when I just want to give up and go away. Nor, do I want to be a "survivor" forever defined by one event in my lifetime. And, I do not want a "survivor's" mentality. It's a constant struggle that I will never "win"... but I can move on... and I would hope you can as well.
I also had the forearm flap surgery to fix the hole in my face, although mine was on the right side. This is my second go-around with DFSP. I was originally diagnosed back in 1999, after having a nickel-sized patch of thickened skin on my cheek for about 20 years. My original cancer was removed using MOHS surgery, and although it's supposed to have a 95% success rate, I was one of the unlucky few that make up that 5%. After 9+ years, I noticed a raised spot along my scar and immediately knew it was back. This time has been more of an ordeal, as the doctors claim MOHS doesn't work well for recurrances, as it's hard to differentiate between scar tissue and DFSP cells. After 9 doctors and 6 surgeries, I hopefully have most of this behind me now, although I'm still having trouble closing my right eye. Did any of you with facial DFSP have nerve damage affecting eye function?0 -
Nerve Damageim_tall said:Forearm Flap
I also had the forearm flap surgery to fix the hole in my face, although mine was on the right side. This is my second go-around with DFSP. I was originally diagnosed back in 1999, after having a nickel-sized patch of thickened skin on my cheek for about 20 years. My original cancer was removed using MOHS surgery, and although it's supposed to have a 95% success rate, I was one of the unlucky few that make up that 5%. After 9+ years, I noticed a raised spot along my scar and immediately knew it was back. This time has been more of an ordeal, as the doctors claim MOHS doesn't work well for recurrances, as it's hard to differentiate between scar tissue and DFSP cells. After 9 doctors and 6 surgeries, I hopefully have most of this behind me now, although I'm still having trouble closing my right eye. Did any of you with facial DFSP have nerve damage affecting eye function?
My main Facial nerve (the large one) which is integral with the parotid Gland (Saliva gland) is now non existant,therefore no feeling in the left cheek and no muscle control
on that side of my face for smiling etc, however I can still control opening and closing
my eye as normal,or wink.My Flap was from my left upper leg because they needed a fairly large donar area to work with approx. 2 1/2"x 3 1/2" around.I have new muscle tissue in
my face taken from my leg,its to keep facial contour and semetry but I can't
control it,I'm trying to reprogram my brain how to control muscle function there and
this is out of the Doctors hands. I should be satisfied that they did a good job
of facial semetry albeit very noticeable facial reconstruction,however I always try for
more,its just me and how I think.Try excercising your facial muscles,thats what I keep doing every time I think about it,who knows,the body is a wonderful thing,it can often repair itself and reroute tasks that were'nt thought possible,if we have at least a will to try.Good luck,take care,and keep on keepin on
0 -
Nerve Damagebstar said:Nerve Damage
My main Facial nerve (the large one) which is integral with the parotid Gland (Saliva gland) is now non existant,therefore no feeling in the left cheek and no muscle control
on that side of my face for smiling etc, however I can still control opening and closing
my eye as normal,or wink.My Flap was from my left upper leg because they needed a fairly large donar area to work with approx. 2 1/2"x 3 1/2" around.I have new muscle tissue in
my face taken from my leg,its to keep facial contour and semetry but I can't
control it,I'm trying to reprogram my brain how to control muscle function there and
this is out of the Doctors hands. I should be satisfied that they did a good job
of facial semetry albeit very noticeable facial reconstruction,however I always try for
more,its just me and how I think.Try excercising your facial muscles,thats what I keep doing every time I think about it,who knows,the body is a wonderful thing,it can often repair itself and reroute tasks that were'nt thought possible,if we have at least a will to try.Good luck,take care,and keep on keepin on
My flap is about 3 1/4"x 3 1/2", but didn't include muscle tissue. This obviously left me with a gaping hole in my arm, which was closed with a partial thickness graft from my thigh. I believe the surgeons did a good job, as most days I'm more self-conscious about my arm than my face. And I am trying to keep an optimistic outlook. I'm currently six months post-op, and in the past couple weeks I've started to regain feeling in my earlobe, and am now starting to get some feeling in my facial graft. So it does appear my body is slowly healing, including some of the nerves.0 -
gleevecekurila said:DFSP Survivor
My husband was diagnosed with DFSP in December 2004. His case was on the left cheek and the treatment was Gleevac and surgery. At that time, Gleevec was an experimental drug. At that time, I could not find ANY cases or support networks for DFSP. Needless to say it was a long, emotional and painful 5 years but last April he did reach 5 years without any reoccurance. The ONLY reason I researched DFSP is because my son (15 years) is now interested in doing a school research project on the cancer his dad struggled with for so long. It is AMAZING and ENCOURAGING how far medicine has come in just 6 years. I wasn't the recipient of this cancer but I was a spouse. My thoughts and prayers go out to all of you... Keri especially. Please let me know if I can help in any way.
EKurila
Hi-
My name is Stu and I'm a 46 year old male in Denver CO. I've just had a recurrence of DFSP on my left temple after eight years, and am quite worried as I've already had reconstructive surgery after the first Mohs procedeure. I would love to hear any info you have about gleevec...
Thanks,
Stu Page
stupage1@gmail.com0 -
Young DFSP-er
I have DFSP on my scalp. Because I have normal African American curly hair, most doctors were convinced it was some sort of ingrown hair. For the past 10 years, I like so many others have been to doctor after doctor with my requests for treatment being ignored. I was finally able to change to a PCP (primary care physician) who referred me to a dermatologist who got me in the door at MD Anderson. My original biopsy was done on Feb 26. My surgery is scheduled for May 6th with a delayed closure scheduled for May 10th. I am in a strange position. The past 6 months of my life have not set me up well to handle this diagnosis. I also have crohn's disease which makes things all the more complicated. Like so many, I was laid off in Oct 2009. I have also managed to lose 3 puppies adopted on separate occasions from local shelters to canine distemper. I am currently working through a temporary agency and for the sake of my sanity, I am sitting out of school this semester. At 25 years old, I am so overwhelmed by this situation. I am tired of hearing how grateful you should be to have a "less aggressive" form of cancer. I AM grateful this rarely kills but I am not grateful how often it disfigures. I will in the next coming days face the reality of shaving my head. As any woman knows, our hair means so much to us. To face the reality that a sizeable portion of my head may be bald forever is overwhelming. I just want someone to tell me how to feel because I have run the gauntlet of emotions.0 -
Keeping it Realim_tall said:Nerve Damage
My flap is about 3 1/4"x 3 1/2", but didn't include muscle tissue. This obviously left me with a gaping hole in my arm, which was closed with a partial thickness graft from my thigh. I believe the surgeons did a good job, as most days I'm more self-conscious about my arm than my face. And I am trying to keep an optimistic outlook. I'm currently six months post-op, and in the past couple weeks I've started to regain feeling in my earlobe, and am now starting to get some feeling in my facial graft. So it does appear my body is slowly healing, including some of the nerves.
Consider this,you have facial muscle tissue,you are accepting the statis quo now like me,you are regaining feeling in your earlobe,and gaining some feeling in your facial graft.
Consider the alternative,you are fortunate,more than I but I consider myself blessed to
come back from this even though I've lost more than you.I just returned from my post-op
checkup yesterday,it was an ironic event that the elevator quit just then as I left the
doctors office and I had to walk down 5 floors,I counted my blessings as I counted each floor that I was strong and able to carry on.I will undergo Liposuction on my cheek when I
am ready (45 mins and go home)the donar area being my upper thigh has more fat tissue and
they will remove that,again I feel blessed to live in such a time as this that the doctors are able to do such procedures.0 -
Hang in there Rock!Rock_n_Remission said:Young DFSP-er
I have DFSP on my scalp. Because I have normal African American curly hair, most doctors were convinced it was some sort of ingrown hair. For the past 10 years, I like so many others have been to doctor after doctor with my requests for treatment being ignored. I was finally able to change to a PCP (primary care physician) who referred me to a dermatologist who got me in the door at MD Anderson. My original biopsy was done on Feb 26. My surgery is scheduled for May 6th with a delayed closure scheduled for May 10th. I am in a strange position. The past 6 months of my life have not set me up well to handle this diagnosis. I also have crohn's disease which makes things all the more complicated. Like so many, I was laid off in Oct 2009. I have also managed to lose 3 puppies adopted on separate occasions from local shelters to canine distemper. I am currently working through a temporary agency and for the sake of my sanity, I am sitting out of school this semester. At 25 years old, I am so overwhelmed by this situation. I am tired of hearing how grateful you should be to have a "less aggressive" form of cancer. I AM grateful this rarely kills but I am not grateful how often it disfigures. I will in the next coming days face the reality of shaving my head. As any woman knows, our hair means so much to us. To face the reality that a sizeable portion of my head may be bald forever is overwhelming. I just want someone to tell me how to feel because I have run the gauntlet of emotions.
Hey Rock,
I don't think anyone can tell you how to feel. I know that I've run the whole range of emotions concerning this crazy diagnosis. You have a double, triple, and quadruple whammy with the Crohn's, puppies, and work situation. I was also so tired of hearing how not serious this cancer is. How can cancer not be serious??? It's infuriating. I have a really close friend that has Crohn's disease as well and is struggling with it so I know how hard it can be. I think I've finally come to a place where I am positive in my resolution to beat this thing. I had my DFSP removed near my collarbone in October 2009 and have a 5 inch long scar and they had to remove a piece of my of my pectoral muscle. I go back and see my oncologist next week because I believe it's come back because there is a pink dot in the middle of my incision scar right where the initial tumor was. I'm not angry anymore, just resigned and hyper vigilant. Hang in there! And after you have to shave your head get a rocking wig! I find that reading other people's stories helps. There are also a couple of groups on FB that are dedicated to DFSP that is really supportive. 0 -
Keep in touch!RebeccaSchuster said:Hang in there Rock!
Hey Rock,
I don't think anyone can tell you how to feel. I know that I've run the whole range of emotions concerning this crazy diagnosis. You have a double, triple, and quadruple whammy with the Crohn's, puppies, and work situation. I was also so tired of hearing how not serious this cancer is. How can cancer not be serious??? It's infuriating. I have a really close friend that has Crohn's disease as well and is struggling with it so I know how hard it can be. I think I've finally come to a place where I am positive in my resolution to beat this thing. I had my DFSP removed near my collarbone in October 2009 and have a 5 inch long scar and they had to remove a piece of my of my pectoral muscle. I go back and see my oncologist next week because I believe it's come back because there is a pink dot in the middle of my incision scar right where the initial tumor was. I'm not angry anymore, just resigned and hyper vigilant. Hang in there! And after you have to shave your head get a rocking wig! I find that reading other people's stories helps. There are also a couple of groups on FB that are dedicated to DFSP that is really supportive.
Thanks Rebecca! I am bald now and actually loving it. lol I'd love to say that I might never grow my hair out again as a choice. Except I just found a few days ago that because the tumor extends from my scalp to my skull, they're recommending radiation after surgery. That lessens the chance that I can have any sort of plastic surgery that will avoid a quarter of my head being bald. Either way for now, with my new (and only) tattoo, I feel like a rockstar. lol I had my last day of work on Friday and I am apprehensive about my income but I am doped up on prozac and anti-anxiety meds as well as becoming very adept at filling out financial assistance applications. I've become very lonely since my closest "friends" have accused me of only talking about cancer. Apparently I've become the cancery cancer obsessed b!+c#. :-( First Surgery on Thursday. Let the games begin.
What happened with your followup visit. Has your DFSP returned?0
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