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Rare brain tumor....DIPG

tmfaubus
Posts: 23
Joined: Jan 2012

I am looking for other adults who have been diagnosed with a DIPG (diffuse intrinsic pontine glioma )

tmfaubus
Posts: 23
Joined: Jan 2012

Anybody out there besides me ??

tmfaubus
Posts: 23
Joined: Jan 2012

Seriously....nobody out there in cyberspace has ever dealt with this ?

cindysuetoyou's picture
cindysuetoyou
Posts: 508
Joined: Dec 2009

Hi, tmfaubus.

I haven't known anyone who has had this kind of tumor. I hadn't ever heard of it, but I tried to learn about it by doing an internet search. I hope that you aren't annoyed and you don't feel like I am wasting your time by responding when I know next to nothing about your situation, but I hated that no one responded and I didn't want you to feel like none of us cared. I think that probably most people on this site would love to help you but don't know much about DIPG. And I think this is a very rare tumor for an adult to have.

I wonder if you could ask your oncologist to put you in touch with other adults that have DIPG? One of the first things our oncologist asked us when my son was first diagnosed was did he want to talk to other young men who were also battling brain cancer.

Also, you might try the people at an American Cancer Society office near you. Maybe Lance Armstrong's foundation, LIVESTRONG could connect you to someone with DIPG? I'm just trying to think of some way that you could find some adults who know what you are going through. I'm really sorry that you didn't find any real help on this site.

Please post on this site again and let us know how you are doing. I will be thinking of you and praying for you too.

Love and blessings,
Cindy

tmfaubus
Posts: 23
Joined: Jan 2012

No worries. I just think it's crazy I have such a rare tumor for an adult. There are kids whose parents are dealing with it but no adults. I still keep searching though. Thanks for the post...I will see ya on the message boards.

LeslieLand's picture
LeslieLand
Posts: 49
Joined: Feb 2012

My husband was dx'ed with diffuse intrinsic pontine glioma in January 2011. He was 33 when diagnosed. He did radiation treatment at MD Anderson in Houston in Feb/Mar/Apr last year (28 treatments). He appears to be somewhat stable right now, and is getting MRIs done every 3 months at this point.

It IS hard to find other adults with this! I went through Imerman Angels and was connected to a young lady in Canada who was also diagnosed with this. It's 12 years later for her now :)

tmfaubus
Posts: 23
Joined: Jan 2012

Nice to hear from you. My last MRI in January showed tumor regrowth. I had been doing avastin/carbopltin treatments since October. Needless to say I have been very depressed. When your NO says go do anything you have wanted to do it shakes you. I was dx'd 9/10...Here it is 2/12. So far all I can say is I am not dead yet. Symptoms are another thing...

LeslieLand's picture
LeslieLand
Posts: 49
Joined: Feb 2012

May I ask what your original symptoms were, and for how long before being diagnosed? did you do any radiation treatments?

I will be keeping you in my thoughts.

tmfaubus
Posts: 23
Joined: Jan 2012

It started with a small catch in the corner of my right eye, a tendency to veer left when walking, trouble swallowing bread, and a headache at the base of my skull. One day at work I was just overwhelmed and called my doctor. He suggested emergency room and MRI. Bam...there it was. That was 9/01/10. I had radiation until 10/22/10, then Temodar until 9/06/11 (no response BTW) and lastly was avastin and carboplatin from 10/11 until 1/10/12. I had some shrinkage early on with avastin but my tumor seems to have become immune to it and is growing again, I am not really sure how long I have. There you have it. Anything you want to know ask away..Even if I can help one other person it's great.

LeslieLand's picture
LeslieLand
Posts: 49
Joined: Feb 2012

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.

tmfaubus
Posts: 23
Joined: Jan 2012

My symptoms have never really went away. They have just worsened over time. I worked from 2/11 until 10/11, even driving. About the beginning of September 11 my right side got weaker...Little stuff like eating and brushing my teeth got difficult with my right hand. Since then my right side has become basically useless. I still have a little but very limited use. My facial numbness is all over the place. Some days my tongue is numb to the point I can barely eat. I am weak and dizzy all the time either from all the chemo or tumor growth, not sure which. Lastly but most worrisome is what seems to be mass effect from swelling. It makes it seem like everything is coming at you overwhelming your senses. I am not trying to scare you guys but be prepared to fight. As far as alternative treatments you might as well...There does not seem to be any surgical options and chemo is hit or miss..Keep in touch.

I_Promise's picture
I_Promise
Posts: 208
Joined: Aug 2011

Dear tmfaubus,

You seem to say that your disease is progressing on chemo; have you thought of a vaccine trial (like GAA synthetic ) or an oncolytic virus trial (like adenovirus, NVD, herpes, or polio)? Just a thought.

I am so sorry about your disease and your symptoms.

J.

tmfaubus
Posts: 23
Joined: Jan 2012

Yes my tumor did progress while on chemo..My NO is one of the best in the nation and the vaccine will not be effective. There are no clinical trials, no new studies. Thank you for the thought but there is just nothing out there.

LeslieLand's picture
LeslieLand
Posts: 49
Joined: Feb 2012

Thanks for the warning. The docs we see are very...conservative in what they tell us. I get it that they just can't know how any individual will react to treatments and how fast this cancer will progress, so thanks for the heads up.

Where do you look for clinical trials? I've seen a few on NCI for adults with DIPG. Some of them look completely scary...but I guess when there aren't any other options...

tmfaubus
Posts: 23
Joined: Jan 2012

This whole thing is and has been scary, weird, and almost unreal...

dragonG7
Posts: 16
Joined: Feb 2012

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,,,

Aimeesmom
Posts: 1
Joined: Feb 2012

tmfaubus,

I'm sorry I've never responded to you via the DIPG network...DIPG's are most common in children between the age of 5-9. The survival rate once diagnosed is between 12-18 months. There are approximately 200-300 children diagnosed each year with DIPG.
My daughter Aimee was DX at 11, in 2007 which is uncommon and battled for 14 months before she past at the age of 12. At the time of her DX she was in a very small group (about 5) that were above the age of 9 that I am aware of. Since then many more into their teens/adults have been DX. I've also become aware of children being DX while still in the womb...

DIPG in adults is extremely rare. I only know of 4 cases where adults between 30-50 have been diagnosed in the last 2 years. Sadly, there is not much information available about DIPG in children or adults. However, the treatment options for adults far better then that in children. Since there is not much information, or known cases of DIPG in adults, I can not offer you statistic's on survival. I do know that since my daughter's diagnosis in 2007, DIPG has now been effecting all ages from birth through adulthood. I know that some say there are survivor's of DIPG, but in many of those cases, partial removal of the tumor occurred and/or a biopsy was able to be done since some of the tumor was outside the pontine. Therefore, giving the doctor's the ability to determine if in fact it is a DIPG and not something else. DIPG are most commonly diagnosed based on MRI's only...

Since DIPG (diffuse intrinsic pontine glioma) are located inside the pontine or center of the brain stem surgery in most cases is not an option. Not even a biopsy can be done to determine what exactly the tumor is. Also, there is nothing that can break through the blood brain barrier (the brain's way to protect itself) As of today and since many of us parents have donated our children's tumor's to research now are they starting to figure out what this tumor is. However, I do feel that the genetic and/or molecular biology is very different between children and adults. Considering in most cases children that are diagnosed haven't even hit puberty so that in itself will change the biology of the tumor. I've been told over and over again that there is no cause, and this just happens, something triggers it...Not an answer I'm welling to accept.

Through my daughter's foundation I focus more on WHY she got sick, in the hope's of finding the possible cause and a way to stop it sooner then later or preventing it all together. I think genetic's plays a part in the growth, but I feel the environment, and many of our electronic's also are a major contributor. Aimee felt that you can't cure something if you don't know what it is or why it's there... Even studying the tumors after death in most cases will not give a true reading since the tumors are altered by chemo and radiation.

I'm sorry I can't offer you more information. Please, know that I will keep you in my prayers, and try my best to find out more for you. I will also see if those others that I am aware of will contact you. Sadly, one of them recently past at the beginning of the year. He was in his early 40's.

tmfaubus
Posts: 23
Joined: Jan 2012

I am in late stage dealing with this. Not much left...

LeslieLand's picture
LeslieLand
Posts: 49
Joined: Feb 2012

My husband was just reading a few days ago about DCA and the trials they are doing at the University of Alberta. It has actually given him (us) some new hope. He even contacted his docs about it. (We live in HI but he sees docs at MD Anderson in Houston, TX.) We will be moving to KS in a few months to be closer to all of his family, and I know he's already thinking about Alberta. Have you read anything on these trials yet?

tmfaubus
Posts: 23
Joined: Jan 2012

What type of treatment regiman does MD Anderson have you on ? My latest was Carboplatin and Avastin.

LeslieLand's picture
LeslieLand
Posts: 49
Joined: Feb 2012

My husband did 28 treatments of IGRT/IMRT last Feb-Apr. He's gone from MRIs every 2 months to every 3 months right now. Talks of temodar later in the future if the cancer starts progressing, as it appears stable right now.

We're both really looking into the DCA trials in Alberta and Ruta 6.

May I ask which docs you were seeing at MDA?

tmfaubus
Posts: 23
Joined: Jan 2012

I have not been to MD Anderson. My NO is/was Krean Fink in Dallas. She is a top rated Dr. MD Anderson had the same treatments and at this point they do not think there is anything they can do. I am going to ask them about proton therapy however.

LeslieLand's picture
LeslieLand
Posts: 49
Joined: Feb 2012

have you done any radiation before?

keeping you in my thoughts every day.

LeslieLand's picture
LeslieLand
Posts: 49
Joined: Feb 2012

Have you had the chance to ask about this? How are you doing? Keeping you in my thoughts...

LeslieLand's picture
LeslieLand
Posts: 49
Joined: Feb 2012

Aimeesmom, I'm so sorry for your loss. It is absolutely devastating to see all the children going through the hell this disease causes. My husband was diagnosed in Jan. 2011 at the age of 33. Every morning when we'd go in for his radiation, we would see the kids/babies...made me cry so many times and make me hug our daughter a little harder every day. I'm so scared that genetics has something to do with this- our daughter will be 3 next month...

I would be very interested to "talk" to any of the other adults you know who have DIPG. I've met one young lady through Imerman Angels who was dx'ed as pediatric (I believe she was 17?) and that was 12 years ago. But as my husband says, hers isn't the same because her tumor was also outside the pons and she was able to have a partial resection. And the poor girl is now dealing with osteosarcoma- totally unrelated, so her docs say.

Our docs in TX told us of one other man who was dx'ed at about the same time, but he opted for a biopsy and did not survive the surgery.

I_Promise's picture
I_Promise
Posts: 208
Joined: Aug 2011

Hi Leslie,

I have looked into DCA for my sister (anaplastic astrocytoma diagnosed august 2011); her MRIs are stable but I want to increase her chances to have NO recurrence. I even got her case reviewed at Medicor (a clinic in Toronto -the only country in the world who will prescribe DCA and follow you medically). The side effects appears mild (numbness) but like anything unproven it is a bit scary. But the alternative -death- is unthinkable.

In the end we decided to add a second oral chemotherapy agent, Xeloda, to the Temodar. I had her tumor analysed and it showed that xeloda could provide some anti-tumor effects (normally xeloda is used for brain mets). The docs at medicor were honest and said that while she is on xeloda she would not be able to take the oral version of dca. But the IV DCA would be available and could be set up without having to go to Toronto. We are doing Xeloda for now, and she is tolerating it well. DCA is in the back of my mind.

Pontine glioma were part (or still are) of a clinical trial with synthetic GAA vaccine. The advantage is that surgery is not required. GAA are some of the most common antigens found on gliomas. Targeting them with the immune system makes sense to me. I am following their data.

I will send good thoughts to your husband. Please let us know how the DCA goes. I would be very interested.

Julia

LeslieLand's picture
LeslieLand
Posts: 49
Joined: Feb 2012

Julia,

Do you have any information on the GAA vaccine trials for pontine glioma? All I've found is for under 21 years.

DCA won't be an option for us until after we've gotten back to the mainland US. Even then... right now he's stable but we're having the docs at MDAnderson look into it with us.

Best of luck to your sister (and you). Keeping you in my thoughts, and please let me know how you're doing.

Leslie

I_Promise's picture
I_Promise
Posts: 208
Joined: Aug 2011

Dear Leslie,

I am going to call the investigators of these studies this week and see if I can have some preliminary results. I am glad your husband's disease is stable. My sister's is too; it gives us time to plan our next move.

Here is the info from the clinicaltrial.gov website. there are four clinical trials that I found with the GAA vaccine. Two are for the grade 2. The other two, one is for all types of gliomas, the other for the recurrent gliomas.

1) for all types of glioma:

Vaccine Therapy in Treating Patients With Malignant Glioma
This study is ongoing, but not recruiting participants.

First Received on February 8, 2008. Last Updated on June 17, 2011 History of Changes
Sponsor: University of California, Los Angeles
Collaborator: National Cancer Institute (NCI)
Information provided by: University of California, Los Angeles
ClinicalTrials.gov Identifier: NCT00612001
Purpose
RATIONALE: Vaccines made from peptides and a person's dendritic cells may help the body build an effective immune response to kill tumor cells.
PURPOSE: This phase I trial is studying the side effects and best dose of vaccine therapy in treating patients with malignant glioma.

Condition Intervention Phase
Brain and Central Nervous System Tumors
Biological: glioma-associated antigen peptide-pulsed autologous dendritic cell vaccine
Phase I

2) this is for recurrent glioma: (but using the GAA vaccine also):

Vaccination-Dendritic Cells With Peptides for Recurrent Malignant Gliomas
This study is ongoing, but not recruiting participants.

First Received on June 23, 2008. Last Updated on August 5, 2011 History of Changes
Sponsor: University of Pittsburgh
Information provided by: University of Pittsburgh
ClinicalTrials.gov Identifier: NCT00766753
Purpose
This is a single-institution Phase I/II study designed to evaluate the safety and induction of an immune response, and preliminary clinical response of vaccinations with Type-1 alpha-DCs (alpha-DC1) loaded with glioma-associated antigen (GAA) epitopes and administration of poly-ICLC in patients with recurrent malignant gliomas. Approximately 30 subjects will be enrolled in this study at UPMC/UPCI Hillman Cancer Center. The study participants in this trial will be HLA-A2 positive male or female adults over 18 years of age. The primary objective is to establish the safety of this approach. The endpoints will be to determine the maximum tolerated dose (MTD) of alpha-DC1 vaccines in combination with a fixed dose of poly-ICLC, using standard criteria and close clinical followups. The secondary objectives are 1) to assess the immunological response against GAAs in patients with recurrent malignant gliomas immunized with DCs loaded with GAA-derived peptides using enzyme-linked immuno-spot (ELISPOT), delayed-type hypersensitivity (DTH) and tetramer assays; and 2) to assess the preliminary anti-tumor clinical activity of the vaccines as measured by radiological response (MRI), overall survival, and 4- and 6-month progression-free survival (PFS).

Condition Intervention Phase
Malignant Glioma
Biological: Dendritic vaccine pulsed with multiple peptides
Biological: The first booster vaccine phase:
Biological: The second booster vaccine phase:
Phase I
Phase II

Knowledge is power. I will never give up.

Julia

LeslieLand's picture
LeslieLand
Posts: 49
Joined: Feb 2012

Thanks, Julia. I'm glad your sister's is stable now, too. Thanks for the info. I look at that site for trials all the time, don't remember the GAA ones. I think lately we had some new hope after reading on DCA and ruta 6.

Please let me know if you learn anything after making some calls!

Much aloha,
Leslie

trswenson
Posts: 6
Joined: Apr 2012

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.

LeslieLand's picture
LeslieLand
Posts: 49
Joined: Feb 2012

trswenson,

I'm so deeply saddened and heart broken by your news of Todd. I have kept him in my thoughts every day. I thought it was wonderful how much he wanted to help others with this awful DIPG. My husband was diagnosed in January 2011 and Todd is the only other adult I've found in the US with this diagnosis. Wishing strength and peace to Todd, you and your family. Blessings to Todd and all of you.

Leslie

trswenson
Posts: 6
Joined: Apr 2012

Thank you so much for the condolences . Todd passed away Tuesday the 10th. They gave him 2 weeks at diagnosis and he lived 20 months . The end of his life was a slow decline until the last week when he literally plummeted . The insult at the end is the medical community in Dallas/Ft. Worth denied his request to study the tumor because it is so rare and he was over the age of 18. That response defies reason to me. I wish you and your family the best in your journey of this ordeal. Todd's suffering is over. I wish you love peace and grace.

LeslieLand's picture
LeslieLand
Posts: 49
Joined: Feb 2012

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

mabey41
Posts: 1
Joined: May 2013

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 !

cindysuetoyou's picture
cindysuetoyou
Posts: 508
Joined: Dec 2009

Dear trswenson,

I am so sorry and sick at heart to hear this about your brother. I kept hoping and praying that a new trial or treatment option would become available for him. I'm so sorry for the pain and suffering you are going through also. My prayers and thoughts are with you...may God give you strength, peace, and comfort.

Love and blessings,
Cindy

trswenson
Posts: 6
Joined: Apr 2012

Thank you for the kind words. May God bless you and your family .

mighty6
Posts: 47
Joined: Sep 2011

I'm so sorry to heard that you have lost your brother! It is especially heart broken to hear that Dr. F rejected his final will to donate his tumor for further research. I have read a lot on clinical trials/research, I know they always have lots of limitation/requirements. I wish they can at least handle this better so it is not so hurtful for your brother and you...
Please take care.

-- Jane

sadinholland
Posts: 226
Joined: Apr 2011

I am sorry to hear that your brother passed. It seemed he wanted to helped others as much as he could. May God bless you and strengthen you as you go on. I am sorry to his his last wish was not granted. It's a shame they did'nt see the benefit in what he was offering. Take care and God bless!

dragonG7
Posts: 16
Joined: Feb 2012

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!

treeg66's picture
treeg66
Posts: 1
Joined: May 2012

My son Cory was diagnosed at the age of 16 (Jan 31st 2011)Although he is not an adult, he still doesn't fall under the usual age group of 5-9. I decided to respond because there are clinical trials called CED (convection enhanced delivery) where they administer chemo directly into the tumor. It is done while in an MRI machine with a machine bolted to your head where the chemo goes in at a very slow rate through a Catheter. The procedure takes approx 12hrs. My son has had this procedure done twice, once in Dec and then again in Jan. He was only the 4th child to have it done and the 1st to have it done twice. The day before the infusion the doctor informed us that Cory's tumor was growing rapidly and they felt he only had a few weeks left. The parts of the tumor that they were able to reach with the infusion had since stopped growing but unfortunately they were not able to reach all of the tumor and we are doing home hospice with him now. He is such a courageous young man and actually said he would go through the procedure again if they were willing to do it. I am not sure if this procedure/clinical trial is open to adults but I figured I would mention it. In addition to that he was in a clinical trial of 33 treatments of beam radiation along with irenotecan & cetuximab which he made it through a little more than half the trial (about 17wks) before the tumor had regrowth. He then tried the clinical trial MK2206 for about a month but this had no affect at all. That was when we decided on the CED. I am not sure if this information will be helpful or not but I wanted to share.
Best of Luck & God Bless!
our family motto is "Never Give Up"

LeslieLand's picture
LeslieLand
Posts: 49
Joined: Feb 2012

Thank you for sharing. I'm so sorry about your son's diagnosis. May I ask where he is doing the CED?

I will be keeping you and Cory in my thoughts. Sending strength to your family.

Leslie

trswenson
Posts: 6
Joined: Apr 2012

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

LeslieLand's picture
LeslieLand
Posts: 49
Joined: Feb 2012

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's picture
LeslieLand
Posts: 49
Joined: Feb 2012

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.

trswenson
Posts: 6
Joined: Apr 2012

God bless your family. Praying for you. Never give up.

erics.smth
Posts: 4
Joined: May 2012

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.

LeslieLand's picture
LeslieLand
Posts: 49
Joined: Feb 2012

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.

erics.smth
Posts: 4
Joined: May 2012

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's picture
LeslieLand
Posts: 49
Joined: Feb 2012

How are you? How did your appointments go? Keeping you in my thoughts...

erics.smth
Posts: 4
Joined: May 2012

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
Posts: 4
Joined: May 2012

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.

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