Liposarcoma - Some Experience & Help

bmscan
bmscan Member Posts: 37
edited November 2011 in Sarcoma #1
Posted - July 2011
I am in the final recovery stages of my 8th liposarcoma tumor. I have been searching this website for 2 years and continue to find it cumbersome to search for Liposarcoma. I know that everyone has a different experience and from experience I know that each tumor experience is different. I wrote a two page "expression" that one can search for and read about my experiences through tumor #7. Search for it:
"Liposarcoma: 10 Years, 7 Tumors, And New Technology… Beating the Odds!"

If you want to know more about my experiences and/or the latest tumor experience, let me know.

Comments

  • Ninappn
    Ninappn Member Posts: 9
    #2
    Liposarcoma stage 4
    Hi there,

    I posted my story in august 2011 , topic liposarcoma stage 4 but cannot find it on the discussion board as I want to see if there have been any reply. Where do I look it up????? Find it difficult to navigate the website.

    Thanks for ur reply.

    Nina
  • texasharp
    texasharp Member Posts: 10
    #3
    i posted my husbands mri
    i posted my husbands mri results on 9/3/11 (very worried please help) and would love to know if you can help me understand it. Does it resemble what you have? everything i have been researching and this is what keeps coming up.

    any help is appreciated.......
  • bmscan
    bmscan Member Posts: 37
    #4
    Ninappn said:

    Liposarcoma stage 4
    Hi there,

    I posted my story in august 2011 , topic liposarcoma stage 4 but cannot find it on the discussion board as I want to see if there have been any reply. Where do I look it up????? Find it difficult to navigate the website.

    Thanks for ur reply.

    Nina

    Posted... Your story
    All I know is that I did my normal search for "Liposarcoma" and your story shows up.

    I finally figured out that the topics get list by the latest posting (whether a new item or a reply). So the topic may be originally from 2009, but someone replied to it.

    Your story is up there, but a few items down.
  • bmscan
    bmscan Member Posts: 37
    #5
    texasharp said:

    i posted my husbands mri
    i posted my husbands mri results on 9/3/11 (very worried please help) and would love to know if you can help me understand it. Does it resemble what you have? everything i have been researching and this is what keeps coming up.

    any help is appreciated.......

    Can I help...
    I would love to help, but my guess is that I would overload you with my symptoms. You need to get a biopsy of the tumors, and it can be done by needle or incision. In either case, it will be on "medical" time which is slower than you want things to be, so be patient (YET keep on top of it!).

    I wrote a whole page or two on my experience which you can read on "Liposarcoma: 10 years 7 tumors..." Do a search for it or just "liposarcoma" and it will be down the list some.

    The other thing is slow down and enjoy time with him. I have survived years with this, but it may be my luck... Reading things on the internet may just worry you more so. Be careful. There are many sad stories. Mine is NOT.

    Please read it and then if you have quesitons, I will reply. :-)
  • texasharp
    texasharp Member Posts: 10
    #6
    bmscan said:

    Can I help...
    I would love to help, but my guess is that I would overload you with my symptoms. You need to get a biopsy of the tumors, and it can be done by needle or incision. In either case, it will be on "medical" time which is slower than you want things to be, so be patient (YET keep on top of it!).

    I wrote a whole page or two on my experience which you can read on "Liposarcoma: 10 years 7 tumors..." Do a search for it or just "liposarcoma" and it will be down the list some.

    The other thing is slow down and enjoy time with him. I have survived years with this, but it may be my luck... Reading things on the internet may just worry you more so. Be careful. There are many sad stories. Mine is NOT.

    Please read it and then if you have quesitons, I will reply. :-)

    thanks
    i was just curious if someone could help me make sense of the MRI before the appt (regular Dr said nothing) so I could be prepared.
  • texasharp
    texasharp Member Posts: 10
    #7
    bmscan said:

    Can I help...
    I would love to help, but my guess is that I would overload you with my symptoms. You need to get a biopsy of the tumors, and it can be done by needle or incision. In either case, it will be on "medical" time which is slower than you want things to be, so be patient (YET keep on top of it!).

    I wrote a whole page or two on my experience which you can read on "Liposarcoma: 10 years 7 tumors..." Do a search for it or just "liposarcoma" and it will be down the list some.

    The other thing is slow down and enjoy time with him. I have survived years with this, but it may be my luck... Reading things on the internet may just worry you more so. Be careful. There are many sad stories. Mine is NOT.

    Please read it and then if you have quesitons, I will reply. :-)

    thanks
    i was just curious if someone could help me make sense of the MRI before the appt (regular Dr said nothing) so I could be prepared. i read your story and it was very uplifting :)
  • Ninappn
    Ninappn Member Posts: 9
    #8
    bmscan said:

    Posted... Your story
    All I know is that I did my normal search for "Liposarcoma" and your story shows up.

    I finally figured out that the topics get list by the latest posting (whether a new item or a reply). So the topic may be originally from 2009, but someone replied to it.

    Your story is up there, but a few items down.

    Stage 4
    Hi bmscan,

    Thank you for ur reply. Got it, found my story and received a reply. I will read ur story and hope it will help my sister somehow.

    Nna
  • Ninappn
    Ninappn Member Posts: 9
    #9
    bmscan said:

    Posted... Your story
    All I know is that I did my normal search for "Liposarcoma" and your story shows up.

    I finally figured out that the topics get list by the latest posting (whether a new item or a reply). So the topic may be originally from 2009, but someone replied to it.

    Your story is up there, but a few items down.

    Stage 4
    Hi bmscan,

    Thank you for ur reply. Got it, found my story and received a reply. I will read ur story and hope it will help my sister somehow.

    Nna
  • Camper37
    Camper37 Member Posts: 1
    #10
    texasharp said:

    thanks
    i was just curious if someone could help me make sense of the MRI before the appt (regular Dr said nothing) so I could be prepared.

    lyposarcoma testing results
    IF they are testing for Lyposarcoma, they will require a CAT scan needle biopsy. Procedure is very easy but you will think that someone kicked in the side after the drugs where off. Last for 10 days! Minor pain or discomfort.

    Then the real fun starts! If and I hope that you are not one of us 5,000 people in the USA that has it, lyposarcoma is diagnosed, desicions need to be made. How old are you?
    I am 67 and if it is lyposarcome, you will need to read everything that you can get your hands on.

    Good luck and let me know what they say!
  • SmedCon
    SmedCon Member Posts: 9
    #11
    Leg Amputation
    I would be interested in knowing where the tumors are located. I am now advised that a second surgery is necessary and the suggested treatment is amputation above the left knee for "Low-Grade Mixoid Sarcoma". I will attempt to locate your previous blog.
  • SmedCon
    SmedCon Member Posts: 9
    #12
    texasharp said:

    thanks
    i was just curious if someone could help me make sense of the MRI before the appt (regular Dr said nothing) so I could be prepared. i read your story and it was very uplifting :)

    MRI Results
    IF you have a copy of the MRI report you should be able to find the written opinion from the radiologist who performed the MRI. Don't assume that your Dr. has read it.

    Hope this helps.
  • SmedCon
    SmedCon Member Posts: 9
    #13
    texasharp said:

    thanks
    i was just curious if someone could help me make sense of the MRI before the appt (regular Dr said nothing) so I could be prepared. i read your story and it was very uplifting :)

    MRI Results
    IF you have a copy of the MRI report you should be able to find the written opinion from the radiologist who performed the MRI. Don't assume that your Dr. has read it.

    Hope this helps.
  • SmedCon
    SmedCon Member Posts: 9
    #14
    texasharp said:

    thanks
    i was just curious if someone could help me make sense of the MRI before the appt (regular Dr said nothing) so I could be prepared. i read your story and it was very uplifting :)

    MRI Results
    IF you have a copy of the MRI report you should be able to find the written opinion from the radiologist who performed the MRI. Don't assume that your Dr. has read it.

    Hope this helps.
  • SmedCon
    SmedCon Member Posts: 9
    #15
    texasharp said:

    thanks
    i was just curious if someone could help me make sense of the MRI before the appt (regular Dr said nothing) so I could be prepared. i read your story and it was very uplifting :)

    MRI Results
    IF you have a copy of the MRI report you should be able to find the written opinion from the radiologist who performed the MRI. Don't assume that your Dr. has read it.

    Hope this helps.
  • bmscan
    bmscan Member Posts: 37
    #16
    SmedCon said:

    Leg Amputation
    I would be interested in knowing where the tumors are located. I am now advised that a second surgery is necessary and the suggested treatment is amputation above the left knee for "Low-Grade Mixoid Sarcoma". I will attempt to locate your previous blog.

    Location Of Tumors
    I do describe the locations in my other blog, but simply put...
    First in right shin
    Second behind right knee
    Third adjacent bladder
    Fourth left pelvic internal(at left in of where surgical cut was from three)
    Fifth right pelvic in muscle layers (...right end of same cut)
    Sixth left central pelvic
    Seventh left central pelvic
    Eight same area (radiation only on this one)
    Ninth left pelvic adjacent rectum, bladder, colon

    All not in any organs.

    Think out the amputation. What alternatives? ...do what you have to do.

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