Rare brain tumor....DIPG

135

Comments

  • LeslieLand
    LeslieLand Member Posts: 49
    #42
    trswenson said:

    hi
    Just wondering how you are doing? We are still having very rough days.

    We're doing okay. Hubby
    We're doing okay. Hubby "passed" his last check up in March, and goes again in July. After a year, we finally got the decision from the Air Force and VA- the rated him with 100% disability and will be medically retired. We should be moving "home" to KS in 3-4 months to be close to all of his family.
  • LeslieLand
    LeslieLand Member Posts: 49
    #43
    trswenson said:

    hi
    Just wondering how you are doing? We are still having very rough days.

    I still think of Todd and
    I still think of Todd and your family often. I can only hope that things start to be a little easier for you; Todd would want all of you to be happy. I hardly knew him (online) but could easily and quickly tell that he only wanted the best for those he cared for.
  • LeslieLand
    LeslieLand Member Posts: 49
    #44
    erics.smth said:

    I was diagnosed Nov 18 2002,
    I was diagnosed Nov 18 2002, with DIPG. I was 22, the Docs said 50/50 chance. fast forward and My docs tell me they do not understand why I am still alive. Less than 1/4% of Adult survive longer than five years. Yet here we are, I did 10mos of concurrent Chemo (Temedar) and radiation. No change, for the better or worse. They just don't know, and that's what startles me. I get yearly check ups now. Although I am a little worried about 2wks ago started having double vision and difficulty swallowing, along with head and neck discomfort at the base of my head. Got an appointment for next week. May God bless you all and keep you close wrapped in his arms. I thought that I was alone glad to see someone else is out there.

    It just goes to show that
    It just goes to show that the docs know so little about this nasty cancer. Wishing you good luck and sending out positive vibes/light (whatever you wish to call it) that your upcoming appointment goes well. Please let us know.
  • dragonG7
    dragonG7 Member Posts: 17
    #45
    LeslieLand said:

    Have your symptoms returned?
    Have your symptoms returned? Your headaches sound very similar to what my husband was (is) having. They thought they were exertion headaches at first, but the flight surgeon sent him for an MRI to rule out anything bad and there it was. (He was a pilot in the USAF.) He's still getting headaches, but we really don't know how much is from the cancer and how much is from the radiation. Since the radiation, he cannot lie down on his back because it will immediately trigger a headache on the base/back of his head. We are so fortunate that he doesn't have any other symptoms right now, but since what they saw on the MRI appears to be the entire pons, they've pretty much told him that he'll know if it's growing before any new pictures are taken.

    I'm sure you can understand the desire to grasp for anything that may possibly help. Have you tried any alternative treatments? I want my husband to try acupuncture- I figure it can't hurt! And we've also modified our diets drastically, to a more primal/paleo diet, especially cutting out sugars and grains. Aside from the **** cancer, he's been really healthy. Even with me and our almost 3 year old daughter getting pretty sick a few times in the past year.

    Thanks again for communicating with me. I will continue to keep you in my thoughts.

    alternatives
    I actually did get acupuncture lol XD
    before, I was totally against it, but eventually, I just said "hey! I'll give it a try? what harm can it be?"
    I actually don't quite know if it helped or not,,, but what I do know is that I recovered unexpectedly better than the doctors apparently predicted. so even the doctors were like "maybe this stuff works?" and eventually encouraged it... I mean in my particular case.
    I was also getting the standard treatment as well,,, so really don't know.
    but I think it's worth a try.
    Chinese medicine does have 3000 years of history... the treatment must have survived for a reason.

    there are people that really know their stuff who can do the real acupuncture, and there are unfortunately people who aren't very good,,,

    I don't know, but it might be good to go to a place someone recommends to you?

    in matters of other alternative treatment, there has been research done with hypnosis and immune boosting and Reiki and immune boosting.
    from what I know, they were both studies unrelated to cancer,,, however, they did manage to boost up the immune system of people infected with HIV: CD4+ T cells (helper T cells) didn't decrease as much in the hypnosis group and actually increased in the reiki group while the control showed a obvious decline.

    another semi-study using a non modified version of self-hypnosis on medical students managed to prevent the decline of their immune system (measured by NK cell count) during exam period while the control group had an obvious decline. I believe the data was enough to say it was statistically relevant...

    there's still a lot medicine doesn't know about! so if there's a chance and there's no harm, I would encourage you to go for alternative therapies that can be trusted.
    please be careful though,,, there are things out there that are fishy,,,
  • dragonG7
    dragonG7 Member Posts: 17
    #46
    trswenson said:

    My brother tmfaubus
    Thank you for communicating with my brother Todd. He is losing his battle with the tumor. In final stages of life. He has requested the tumor to be studied by removing a section. He really wants to help someone else. We are all heart broken and hurting as we experience the end of his life. God bless you and your family.

    I'm really sorry
    I am so sorry to hear that,,,

    he is in my prayers!
    and I really truly admire him for trying to help others even in such a difficult situation!
  • erics.smth
    erics.smth Member Posts: 4
    #47
    LeslieLand said:

    It just goes to show that
    It just goes to show that the docs know so little about this nasty cancer. Wishing you good luck and sending out positive vibes/light (whatever you wish to call it) that your upcoming appointment goes well. Please let us know.

    I'ts back
    My tumor has started to grow again, and also have two new little friends. I have an appointment today for the Neuro oncologist and monday a second doctor as a second opinion. I am praying you please pray for me to.
  • erics.smth
    erics.smth Member Posts: 4
    #48
    LeslieLand said:

    It just goes to show that
    It just goes to show that the docs know so little about this nasty cancer. Wishing you good luck and sending out positive vibes/light (whatever you wish to call it) that your upcoming appointment goes well. Please let us know.

    I'ts back
    My tumor has started to grow again, and also have two new little friends. I have an appointment today for the Neuro oncologist and monday a second doctor as a second opinion. I am praying you please pray for me to.
  • LeslieLand
    LeslieLand Member Posts: 49
    #49
    erics.smth said:

    I'ts back
    My tumor has started to grow again, and also have two new little friends. I have an appointment today for the Neuro oncologist and monday a second doctor as a second opinion. I am praying you please pray for me to.

    How are you? How did your
    How are you? How did your appointments go? Keeping you in my thoughts...
  • erics.smth
    erics.smth Member Posts: 4
    #50
    erics.smth said:

    I'ts back
    My tumor has started to grow again, and also have two new little friends. I have an appointment today for the Neuro oncologist and monday a second doctor as a second opinion. I am praying you please pray for me to.

    New Territory
    Well the Tumor has started growing, rather agreeively. We have started reirradtion, Chemo and another infusion therapy called Avastin. only on #4 rad and #6 chemo, and avastin #1 but tings are going well so far. Some of the symmptoms have reduced with the steriods only to wait and see if they get better. This is going to kill me and I know this. we are throwing the sink here in order to get as much time as possible maybe a year. There is no knowing what will happen. Remember that you are not alone and to ask lots of questions before acting on anything and to always no matter what take care of your family first. may
    God bless and keep you all.
  • LeslieLand
    LeslieLand Member Posts: 49
    #51
    erics.smth said:

    New Territory
    Well the Tumor has started growing, rather agreeively. We have started reirradtion, Chemo and another infusion therapy called Avastin. only on #4 rad and #6 chemo, and avastin #1 but tings are going well so far. Some of the symmptoms have reduced with the steriods only to wait and see if they get better. This is going to kill me and I know this. we are throwing the sink here in order to get as much time as possible maybe a year. There is no knowing what will happen. Remember that you are not alone and to ask lots of questions before acting on anything and to always no matter what take care of your family first. may
    God bless and keep you all.

    Eric,
    Oh no. I was so
    Eric,

    Oh no. I was so hoping to hear better news. How much radiation are you scheduled to do?

    I've had quite a few people ask me if we've considered seeing Dr. Burzynski? Just curious what your thoughts are on him/that clinic.

    We've also started using essential oils - a brain cancer protocol. It can't hurt, right? We also ordered some Ruta 6, but haven't started it yet. I think my husband is getting ready to start throwing everything at this damned cancer. He had a headache yesterday- the bad kind at base of skull, and I know it bothered him. He's not scheduled for another check up/mri until August.

    I will be keeping you in my thoughts and sending all the healing thoughts and light out into the universe for you. Please keep in touch, and know that I'm here.

    Take gentle care,
    Leslie
  • princesspurple
    princesspurple Member Posts: 6
    #52
    erics.smth said:

    I was diagnosed Nov 18 2002,
    I was diagnosed Nov 18 2002, with DIPG. I was 22, the Docs said 50/50 chance. fast forward and My docs tell me they do not understand why I am still alive. Less than 1/4% of Adult survive longer than five years. Yet here we are, I did 10mos of concurrent Chemo (Temedar) and radiation. No change, for the better or worse. They just don't know, and that's what startles me. I get yearly check ups now. Although I am a little worried about 2wks ago started having double vision and difficulty swallowing, along with head and neck discomfort at the base of my head. Got an appointment for next week. May God bless you all and keep you close wrapped in his arms. I thought that I was alone glad to see someone else is out there.

    I'm so sorry to hear it's
    I'm so sorry to hear it's back. Just wanted to let you know your post re: hitting the nearly 10 year mark without progression brought me a lot of hope. Thanks so much for sharing. You are definitely not alone. I was diagnosed at 25, that was back in 2008. Am curious, are you considering any further treatment/trials at this stage?
    Thinking of you during this difficult time.
    Best.
  • danishguy40
    danishguy40 Member Posts: 3
    #53
    cancer as well
    i have never heard of the type of condition you have or had but i am sorry that u have had to go through such a difficult time.i was told i had a brain tumor on my right side about three years ago everyday life seems to be a struggle now but i hope that you are well god speed brother
  • HopefulSister
    HopefulSister Member Posts: 1
    #54
    LeslieLand said:

    Eric,
    Oh no. I was so
    Eric,

    Oh no. I was so hoping to hear better news. How much radiation are you scheduled to do?

    I've had quite a few people ask me if we've considered seeing Dr. Burzynski? Just curious what your thoughts are on him/that clinic.

    We've also started using essential oils - a brain cancer protocol. It can't hurt, right? We also ordered some Ruta 6, but haven't started it yet. I think my husband is getting ready to start throwing everything at this damned cancer. He had a headache yesterday- the bad kind at base of skull, and I know it bothered him. He's not scheduled for another check up/mri until August.

    I will be keeping you in my thoughts and sending all the healing thoughts and light out into the universe for you. Please keep in touch, and know that I'm here.

    Take gentle care,
    Leslie

    How is your husband doing?
    My brother was diagnosed 11/11. He was given radiation combined with temador. He had some what clean scans and in 8/12 it showed some reduction in the tumor. The following month he started to get symptoms and his scan this month showed new growth. They are starting him on avastin with ceenu. I was wondering how your husband was doing? We are hopeful that this will work but worried about the side effects. I was looking into Ruta 6. Have you been able to try it? I appreciate any info or support. Your husband is in my prayers!
  • LONDON_FD
    LONDON_FD Member Posts: 1
    #55
    Diagnosed 02/21/07

    Hi I was diagnosed February 21, 2007 at 20 years old and given a year to live.  I have undergone 2 months of radiation and several stints of chemotherapy (Temodar).  It has started growing twice before and I gained a "little buddy" in Sept. 2011 that has since stablized.

    I initially started out with excrutiating pain in my legs when I would lie down which had all my doctors believing it was a pinched nerve, a million tests later, the MRI that was supposed to last 20 minutes, instead took 2 hours, revealed my DIPG.

    I currently am having double vision (for more than a year), terrible balance, , head pressure, scratchy voice/trouble breathing/speaking, choking issues, numbess in my face and tongue, hearing loss in my right ear, dry mouth and terrible dizziness.

    I receive scans every 3 months and my last one (March of this year) showed no new growth so we're unsure why I am having such severe symptoms (more severe than symptoms at date of dignosis even). 

    I am going to MD Anderson next week to seek help there.

    Does anyone have any suggestions?  Particularly for the double vision? 

    Any help would be greatly appreciated and if I can help anyone with their fight please don't hesitate to ask =)

    -LONDON-

  • mabey41
    mabey41 Member Posts: 1
    #56
    LeslieLand said:

    That is quite the insult! I
    That is quite the insult! I just don't even know what to say about that. In the few trials I've found for DIPG, the majority are only for patients aged 18 yrs or 21 yrs. I can understand them concentrating on the pediatric cases, but Todd was leaving them a GIFT to study his tumor. (I cannot stop shaking my head.)

    I had not realized that they had only given him 2 weeks initially. He definitely was a strong man!

    Thank you for your well wishes.

    Take gentle care,
    Leslie

    Any other adults with pontine glioma who had proton therapy ?

    Hi,  I am just trying to find out if there are any other adults with pontine glioma that had proton therapy ? I was dignosed almost 8 year ago at the age of 46 and had radiation and different types of Chemo therapies but lately it seems to be coming back and I am thinking about proton therapy, so I wanted to know if anyone has successfully gone through it or any other clinical trials for that matter with this type of Glioma as an adult.

    can someone please respond if you have any information about it..thanks !

  • Sammiesdad
    Sammiesdad Member Posts: 9
    #57
    DIPG

    Any body still in this discussion board?  I have been following for sometime, but didn't need treatment until now.  The monster woke up.

     Would like to talk.

    Thanks

  • Sammiesdad
    Sammiesdad Member Posts: 9
    #58
    Sammiesdad said:

    DIPG

    Any body still in this discussion board?  I have been following for sometime, but didn't need treatment until now.  The monster woke up.

     Would like to talk.

    Thanks

    Surely someone is still out

    Surely someone is still out there, really need to talk with others.

    Thanks

  • mccindy
    mccindy Member Posts: 81
    #59
    Sammiesdad said:

    Surely someone is still out

    Surely someone is still out there, really need to talk with others.

    Thanks

    talk

    Hi Sammiesdad, I don't have the same type of tumor that you have. I do have a brain tumor, however, and if you need someone to talk to, I'd be happy to listen and help in any way I can. 

  • Sammiesdad
    Sammiesdad Member Posts: 9
    #60
    mccindy said:

    talk

    Hi Sammiesdad, I don't have the same type of tumor that you have. I do have a brain tumor, however, and if you need someone to talk to, I'd be happy to listen and help in any way I can. 

    Thank you so much, I'm sorry

    Thank you so much, I'm sorry you're dealing with this also.

     

    I am really looking for others who have similar disease for symptoms, treatment, n/o etc.

     

    I'll certainly keep you in mind.  It's hard for others to know what we are dealing with

    Thanks

  • LeslieLand
    LeslieLand Member Posts: 49
    #61
    Sammiesdad said:

    Thank you so much, I'm sorry

    Thank you so much, I'm sorry you're dealing with this also.

     

    I am really looking for others who have similar disease for symptoms, treatment, n/o etc.

     

    I'll certainly keep you in mind.  It's hard for others to know what we are dealing with

    Thanks

    Sammiesdad,  I changed the

    Sammiesdad,  I changed the email I have associated with this board so I'll get messages in a more timely fashion. I'm sorry your symptoms are progessing...makes my heart so heavy.  I'm happy to talk to you.  May I ask where about you live?

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