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Glioblastoma Grade IV

espurl
Posts: 4
Joined: May 2009

5-30-09
My sister was recently diagnosed with Glioblastoma and we are wanting to know as much as possible on treatment options, effects of , and alternative therapies. We understand it is important to educate ourselves but then to decide what our own journey will look and feel like. We know the power of thoughts and how thoughts manifest. Please help us to shine even more light today.. Comments please

MAJW
Posts: 2515
Joined: May 2009

I can only speak from my best friend's experience with a glioblastoma multiforma, stage IV....She is 51.......she was diagnosed late October 2008......Had 4 1/2 hours of surgery first week in November.....her's was centrally located in the top of her head.......she had the surgery on a Wednesday and was home on Saturday, amazing! Very small amount of pain as the brain doesn't have pain receptors.....amazing, again! She, after 4 weeks began radiation, 6 weeks 5 days a week.......each treatment amounted to 15 minutes.....took us 45 minutes to get there! Her scalp looked "sunburned" but otherwise minimal side effects, although the radiation did cause hair loss.....(she looks fabulous in her wig!) She now has been on Termador, oral chemotherapy for the past 6 months and is doing absolutely GREAT! No side effects what so ever from the chemo...... According to her doctors the oral chemo works best for this nasty type of brain cancer. Her attitude has been fantastic! She and I have been best friends for 24 years and I must say, she is my HERO! She has a great support system, her husband, kids and many, many who love her......That is so important. Her first MRI showed NO CANCER..........hopefully they got it all before it had a chance for all it's "little fingers" to invade the rest of her brain. She has her next MRI and CAT scan in July......we are all praying for the same result!
Your sister is in a living nightmare and will need all the love and support all of you can give. BUT please, don't listen to "horror stories".......EVERYONE and EVERY CASE is different! Don't allow NEGATIVITY around her, even if it means cutting toxic people off..........
My friend is now part of my support system as I was diagnosed 2 months ago with breast cancer..two friends with cancer,we support one another and I must say, no one knows, other than one with cancer what one is going through.....I will be fine.......But her love and concern towards me is so uplifting.....I pray that your sister comes through all this, as well as your entire family.......with flying colors.......Best wishes and God bless!

espurl
Posts: 4
Joined: May 2009

I so appreciate your supporting words. My sister is so positive and will travel this journey beautifully. I extend full support and prayer to you both. You two are truely an continued inspiration.

rickmele
Posts: 1
Joined: Sep 2010

How is your best friend doing ? My brother was diagnosed with GBM grade 4 a couple month ago. After radiation and temedor the tumor has grown 25%. The oncologist basically said theres nothing more that can be done and that we should just try to have him enjoy life as much as possible for the time he has left. We are heartbroken. Do you think ongoing use of temador was helpful in your friends case ?
We are seeing the brain surgeon in a couple days to get his asessment. In the first surgery they were only able to remove about 10% of the tumor.

Thanks

arodrig87
Posts: 1
Joined: May 2013

Hi, I was wondering how your brother is doing. My brother is in a similiar situation and would love to hear other peoples stories.

 

Thank you.

NextSteps
Posts: 3
Joined: Dec 2010

Majw, your email inspired me for my journey is similar. Early November I had the brain tumour removed... 110% and am now in radiation and taking chemo etc.
I am feeling like the healthy vibrant positive me most of the day... still adjusting to the pre-christmas challenge!(glioblastoma stage IV)
Trust your friend is well for I wish to mirror her a MRI with NO CANCER!

Cheers
Ms NextSteps

EDClarke
Posts: 5
Joined: Aug 2011

How are Ya'll doing? I hope all is well because your stories are inspiring! My husband is 26 and we have a 1 year old child. He was just diagnosed with a Level 4 GBM multiform. Our fight has just begun...

msomawas
Posts: 22
Joined: Aug 2011

Hello. My husband was diagnosed on 7/3/2011. We are a little over a month into our fight. My husband is 62. Your husband is so young, and you with a small baby. I am so sorry. David started treatment on 8/3 - 6 1/2 weeks of radiation and chemo. Is your husband's tumor operable? David's is not.

Liltan
Posts: 1
Joined: Nov 2011

My dad was diagnosed with glioblastoma IV this month and had surgery. Now they are going to start his chemotherapy and radiation. I am hoping and praying for the best. How is your friend doing now days. And how are you doing, also.

JakePuppy
Posts: 1
Joined: Dec 2012

Just read your wonderful uplifting story about your friend. My husband has GBM 4 and had surgery on 11/5/12. The entire tumor was removed and a Glio wafer was inserted. He starts radiation and Temodar next Tuesday. I am absolutely sick with worry. He also has prostate cancer and in the middle of radiation treatments for that which are now on hold. I was diagnosed with breast cancer last December and am doing well so far. Horrible year for us. But we have faith and reading your post gives me some comfort that my husband can beat this monster. He is so upbeat and is always on the go. Nothing gets him down but sometimes I feel like I am going to fall apart. But I know I can't.
Thank you so much for your post!!!

bethanyd
Posts: 1
Joined: Jun 2009

Hi There, sorry to hear about your sister. Please email me at my personal email bethanydoughty18@hotmail.com

My dad was diagnosed in january with a GBM Grade 4. He went downhill very fast and received radiotherapy after us pushing and pushing for help. However the radiotherapy failed. Lukily we had been researching alternative therapies. We are in contact with a doctor from kosovo who has been unbelievable. He is the only person that I can find that has actually cured people with this type of tumour. He told us what medicine to order for my dad and set him a strict protocol. Since starting this my dad has done nothing but improve! The doctors cannot believe how good he is so please please email me and i will send you this doctors details. He is amazing!

Beth

espurl
Posts: 4
Joined: May 2009

Beth,
Please send any info on the alternative therapies used for Glioblastoma Grade IV. I am very proactive with my health and know that there is a melding of alternative and alopathic medcines. Again the alternative approach needs to the choice of the patient and their family, It is not my decision... I do want to be informed. I appreciate your assistance and concerns.

jeffballew
Posts: 9
Joined: Apr 2010

I am enrolled in that clinic as of this month and have started a Gene Targeted Therapy Regimen. This clinic is curing inoperable brain tumors, including GBM. I am very hopeful... Be careful what you read, it's not a scam. email me if you are sceptical. also youtube "Burzynski Movie"

jeffballew@nationsvs.com

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

Hi, Jeff.
I saw an older post on this thread where you mentioned that you were being treated at duke. Just wondering why you are changing to the Burzynski Clinic?
I hope your treatment plan is very successful---please keep us updated!
Love and blessings,
Cindy in Salem, Oregon

JCM2468
Posts: 4
Joined: Aug 2011

Hi
I'm just wondering how the Burzynski clinic went for you?
I'm from Australia and
My dad was diagnosed with GBM Stage 4 last year in August they cut the tumour out then (It was the size of a large orange) and they told us he would only live approx. 3 months as he had REFUSED any chemo or radiation as he doesn't believe in it at all.
My dad was doing natural treatments and organic diets Etc etc which has worked out good as he is still here today and more positive than ever! one year and 2 months later, although the tumor grew back again he had brain surgery for a second time last week and they cut out what they could again.

Now he is going to catch a boat to America early next year and go to Burzynski clinic
We have been talking to the doctors there over phone and email and it sounds very promising, and the movie was just amazing to watch. only downfall is it is going to cost him a lot of money getting over there and all that

So I'm really really hoping its legitimate
Please let me know how your experience there went I would love to hear from you!

Thanks

espurl
Posts: 4
Joined: May 2009

Beth,
I can be reached at espurl@gmail.com with the info on alternative therapies. Since I am a massage therapist and have been treating my sister with CranioSacral therapy she is open to options. At least she is willing to education from all avenues. I am sure she will be doing the chemo and radiation very soon and possibly additional research at Duke. We want to know all possibilities.

Effie
espurl@gmail.com

deemullen
Posts: 3
Joined: Jul 2009

Hi Beth,

I just started a blog and read yours which gave me hope. My boyfriend has GBM stage 4 - has had surgery, done Temodar and radiation and now doctors are saying that tumor is growing and they would like him to have another surgery.

We'd like to look into alternative treatments and your blog seemed interesting. Please let me know how this has effected your dad's outlook. I would be interested in knowing more about the doctor in Kosovo and how you found him.

Thank you for inspiration. I look forward to hearing from you. This is so devastating - I'm at my wit's end.

Dee

DaddysLittleGirl73
Posts: 1
Joined: Aug 2009

Dee,

I would just be happy that the Doctors are able to have another surgery as an Option for your Boyfriend. If you can do it through the alternatives go for it.

My dad has this Monster, he was Diagnosed in Nov.08 had surgery was in the hospital for a week and sent home. He was doing great the first MRI showed they got it all, the second showed it was coming back but the Dr was unsure at first So they re did it 3 months later and it has grown back.
He has7 more Radiaition treatments and them maybe Chemo but he is not listed as a surgical candiate. So if your Boyfriend can have another surgery then I would take that opportunity and run with it. Sorry if it shoulds a little harsh I don't mean it to sound that way. I am just happy that he has that option.
My Dad is listed as Uncurable, he's taken the Tremador and it didn't work for him. So they are going to do another kind of chemo, that is if it is an opion. My mom has to talk with Hospic and set that in motion because of how aggressive this GBM is.
So take all the options you have and spend as much time with him as you can.
Enjoy all the time you have with the people you love. I hope and pray for all that are fighting this Monster that they have the power to beat it.
My dad looks good and you wouldn't know that he has it unless your told but his Doctors have said it could turn fast. We are not giving up but it does make it a little harder to keep spirits up.

deemullen
Posts: 3
Joined: Jul 2009

My boyfriend has ended temodar and has just begun avastin. That is the next drug to be used in the fight against this hideous disease. I'm not sure how effective it will be. He is devastated by Teddy Kennedy's death since this is the same cancer that killed Mr. Kennedy. He seems to be forgetful, a bit unsteady on his feet, but otherwise looks pretty good.

It's a very lonely time for me since we can't do a whole lot together since he gets tired. No hiking or biking so I have to go alone. He takes a lot of naps which I encourage him to do. we just go on day by day.

Beckymarie
Posts: 358
Joined: Aug 2009

My husband is curently on avastin. He was diagnosed in March. The tumor is inoperable so had the 6-week course of radiation and temodar. The initial MRI showed a decrease in the tumor volume. Unfortunately, the next MRI showed substantial growth. Was your boyfriend's tumor operable? It is very lonely. We also had a very active social life. Now nothing is the same. It is the unknown that is so hard. I hear so many positive stories about brain cancer patients living out several years, but wonder what their quality of life is like. Our oncologist is trying to be positive, but has said that even though 25-30% of people diagnosed with Lv. 4 glios are living longer than a year, 70-75% do not. I don't know if a tumor that is operable has a better prognosis than one that is inoperable, or is it how patients respond to the drugs? I wish your boyfriend luck in fighting this disease.

meaganandshane
Posts: 10
Joined: Feb 2012

Gday from Australia,

My husband (34 years of age) was originally diagnosed with stage 3 Anaplastic Oligod astrocytoma on April 5th 2011. He had surgery on the 8th April, they removed 7cm by 5cm from the right tempral to the occipital lobe. The neurosurgeon could not tell if she fully excised the tumor. 1 week later they diagnosed him with stage 3 brain cancer. 3 weeks after surgery my husband started 6 weeks of full brain radiation. Whilst having radiation they recommended an MRI, the MRI come back not very favourably the tumor had grown back to it's original size. They stared my husband on chemo (Temodal - 400mg 5 days on, 3 weeks off) on top of radiation. They upgraded him to stage 4 GBM as it was growing so aggressively. 6 weeks later we had another MRI, this was a bit more favourably for us as the tumor had now stopped growing. My husband is on round 9 of chemo and the tumor is still stablized with small changes. He is doing remarkably well. He gets quite tired but on the plus side of things he doesn't have as many seizures as he used to (he is taking keppra 2000mg a day). If you were to look at him you would not think that he had this horrible disease. My husband has a very positive outlook even though we know that their is no cure. We hope and pray for this everyday. My husband has written a song to me, he wrote this to me after he was diagnosed. In doing this I feel that he has given me a part of him he has touched many hearts I hope to share our story with you. I hope all of your loved ones are doing well. I hope to read positive outcomes from you all. xoxoxo

You can view my husbands song on youtube called Shane Latham Take my hand it has pictures of our family and we have also posted a MRI of his brain tumor.

Here is the link - http://www.youtube.com/watch?v=_MvsFqoRPZc&context=C3643189ADOEgsToPDskIammcbqUkukHoxO-LaLzRv

josh79
Posts: 1
Joined: Oct 2011

sorry for your boyfriend dee. I'm taking avastin too. I hope your boyfriend is still ok.

RLR
Posts: 36
Joined: Sep 2009

How long has your boyfriend had the GBM 4? I too have GBM4.at 54 years old I was diagnosed on 12/15/08 and had surgery on 1/13/09. I also had the 6 glio-wafers at the time of surgery. I went through 6 weeks of radiation and have been on Temadar chemo ever since. My doctor says I will be on chemo for at least a year. My last MRI on 7/24 the doctor said the tumor was the same size ,no growth. I would like to see it shrink but he says as long as it is not increasing he said that is good and is happy. My next MRi is tomorrow 9/11/09.

georgegnm
Posts: 2
Joined: Sep 2009

I have been battling this tough disease since may 2008. From the beginning I started a strict macrobtics, vegan diet. There is no growth. the Mri's have been clear the doctors have been shocked. I believe the change in my environment and food has saved my life.I was only given 6 months to live. I laughed at the doctors and told them defeat will never be an option. Any questions please ask me anything.

NextSteps
Posts: 3
Joined: Dec 2010

georgegnm your email inspired me.
What news.... do share more.
For you inspire me tooooo.

I was operated on in november 2010, "110% removal" was the surgeon's success... the MRI in February I believe will be the key vision or view....

I am inspired by you for while they say 12-15 months.... oh actually 5 years, I see that I am the girl who is a key creator of my destiny.

2010 close onto 2011.... happy new year to you

Ms. NextSteps

gojko25bm
Posts: 1
Joined: Jan 2011

tell me everything you can!

ritakron
Posts: 2
Joined: Feb 2011

PLEASE tell me what you did! My mother was diagnosed.

medill2
Posts: 1
Joined: Feb 2011

I was diagnosed with stage IV Glioblastoma Brain tumer on May 23, 2010, only two days after I was married. I am 37 years old with three daughters, my youngest turned 8 last August. The diagnosis blew me away, I had been batteling headaches and pressure in my head for 7 weeks, every dr. I went to said it was a sinus infection, they put me on steroids for a week and sent me on my way. It was my new husband that took me to a different hospital and demanded a MRI, the news was devistating, All I remember was the dr. saying it's in a location where they can't operate, and I remember telling him not to give up on me, that I was a fighter and I was ready to give it my all. So now I'm in a fight for my life and the chance to watch my children grow, your story gives me the inspiration to keep fighting.

thebrother
Posts: 2
Joined: Sep 2011

How are you doing?

Burnedout
Posts: 2
Joined: Dec 2011

I just wanted to let you know that my husband was diagnosed in August 2010. He has had 3 surgeries and 3 tumors have been removed, the last grew in a period of 10 weeks and grew to the size of an orange. Radiation and Temador was started 6 weeks after the last surger in March 2011. He went 5 days a week for 6 weeks, then was on oral Temador for another 6 weeks after that. In July we went in for another MRI and found 4 new tumors. The doctors then started him on a drug that had been used for breast cancer but was unsuccessful in that area but show some success with brain cancer. That drug is called AVASTIN. He had IV's every other week for 4 months. In November his MRI showed no more tumors. The AVASTIN killed them. He is now in remissiion. This is not to say he is back to his old self, not by a long shot, but it has given us hope where we were making arrangements for hospice to come in. I suggest you check into this, you have nothing to lose. Best of luck.

Burnedout
Posts: 2
Joined: Dec 2011

My husband was diagnosed in August 2010 with a GBM IV. He had 3 surgeries and a total of 3 tumors removed in his frontal/temporal lobe. When radiation and Temador didn't work, and 4 new tumors grew,the doctor put him on a regiment of Avastin every other week for 8 weeks. In November the MRI showed the tumors gone...Rejoicing! He is in remission. However, he is still as weak and tired as he ever was. I was expecting to see some major improvement by now. At least that's what the doctors said should happen. He is still unable to walk unassisted without either a walker or assistance from a person. He stumbles often, has a terrible memory and talks crazy stuff that makes no sense. In fact it seems like he's getting worse, but had an MRI last week and other than the fluid on the brain, there has been no change. I don't get it.

Does anybody know how long it may take for him to get back to "normal". I've seen people online and on tv who are GBM IV survivors and they look great. I'm so burned out and tired. I just want my husband back.

TAMMY S's picture
TAMMY S
Posts: 16
Joined: Jan 2011

I have been having some mental issues since my last resection about a month ago. My surgeon believes alot of it has to do with damage done from radiation done after my 1st surgery. My last surgery i had was to remove the radiation nercosis that was there. They ended up finding more tumor cells in that mass of crap. I was pretty much told the way i am now could be the "new me". Well that is not the answer I was looking for! I have a 12 and 10 yr old!!!and I am 44!! I know it has to be so exhausting for you as it is for my hubby. But stay positive and keep him moving!!!! Try to make him feel as normal as possible.

msomawas
Posts: 22
Joined: Aug 2011

Your comments give me hope for my husband and I would be interested in the changes you made. I do not know if he would agree to be vegan, but I would do anything to save his life.

anrish
Posts: 2
Joined: Sep 2012

Hi there, i know this is a late response but could you please advice me what your diet involved. My mother has a grade 4 gliblastoma.

phillip1950
Posts: 4
Joined: Jul 2012

Hello, My name is Phil and I'm from Michigan. In June 2012, my son-in-law was diagnosed with a glioblastoma level 4 brain tumor. The doctor said that he removed it totally. There were some very small microscopic particles so small that they didn't know what they were but with his age being 37 and in good health, they will give him aggressive radiation and a chemo regiment. Today, Sept 13, 2006, he is going in for his first mri since he has completed his 6 weeks of radiation. I'm hoping for some good news today. I hear so many stories that this monster regrows itself back. Can you please give me more info about this? Thank You, Phil
..................Update, Today is Sept 14th. Recieved a call from the doctor's. The treatment of radiation and the case study did not work. There is now another tumor next to the one that they had removed. The surgeon stated that this one cannot be removed because it is deep and will effect his speech so now they are going to give him a one time radiation along with stronger doses on temedor, and afterwords they are going to go with avastin?. We are all worried sick. To me this is only guess work and hoping for the best. They said that with the last treatment, temedor was given to him in a lower doses and they believe that it works given in Higher doses. If that's the case, then why didn't they start him off on that instead of this case study. Sorry, but I am so nervous and frustrated right now that I really cannot think anymore. Can anyone help me PLease.....Phil

Genadey
Posts: 1
Joined: Oct 2012

We just read your post and we would like to ask you for more info. on the vegan diet and strict macrobiotics. Our dad has just been diagnosed a terminal Glioblastoma Grade IV Tumor. He lives in London. The Doctors wouldn't offer any kind of curative treatment, just some steroids (maximal dose of 8ml). It is very cruel and sad to let him without any hope. He is healthy otherwise and has a strong will to fight this monster :(. We would greatly appreciate if you could give us more info.
Best Regards, Ljubica and Mike

kiwimom
Posts: 2
Joined: Jan 2013

My husband was diagnosed with same gbm 4 may 2012. Surgery may 17 most...98% gone. Cancer free for now. Chemo and radiation june july. Attitude is important. Laugh a lot. Dri nk magosteen juice and eat powered greens and raw protein from health food store.  I had breast cancer in july...surgery and cancer free...then brain aneurism in november....what a year....we are both doing good. prayer is most important!!!

jeffballew
Posts: 9
Joined: Apr 2010

Call them!!

cristina54
Posts: 2
Joined: Aug 2009

Dear Beth: My husband of 32 years, (he will be 57 next August 25) was diagnosed with brain tumor on July 9, 2009. He had a craniotomy on July 13 and they were not able to remove it all. Pathology showed GBM-4. We are waiting for Radiations and Chemo (Temodor) to start by the end of this month. I will like to have an alternative and since you mention the doctor from Kosovo I will like to have more information about him. This is a very aggressive disease and finding different alternatives is very wise. Thank you for your post. Best regards!

Cristina

hannacat's picture
hannacat
Posts: 101
Joined: Jun 2008

my husband is having speech and other problems and i am worried about a brain tumor or aneurysm. i am a cancer survivor and have a need to know the facts while he is in denial. could you share the symptoms that led him to seek treatment. my prayers are with you.

sue Siwek
Posts: 281
Joined: Jun 2009

the only way to tell that i know of is an mri. make an appointment with a neurologist and they will take it from there. an mri is non invasive, takes about 45 min.

swimteach1
Posts: 2
Joined: Aug 2009

Hi Beth,

Interested in the alternative mediine from Kosovo. can you send me this information.My husband was diagnosed with a terminal brain tumor and it is aggresssive. Any information you can offer would be greatly appreciated.

Thanks,
Lynne

P.S. Feel free to email it to my personal email address at
swimteach1@comcast.net

Venoir
Posts: 1
Joined: Aug 2009

Hi Lynne and anyone else who is interested. I am a cancer survivor of nearly 7 years since diagnosis. I had aggressive breast cancer and opted for a mastectomy to avoid radiation and chemotherapy and then went to see Dr Nicholas Gonzalez, MD in NY. Dr Gonzalez was trained at Cornell in immunology and presently treats nearly all cancer types many times with great success. He has treated people with metastatic cancer who are not merely surviving, but thriving on his protocol and he has treated a few pancreatic cancer patients who are doing well years after their terminal prognosis. Here is his website: www.dr-gonzalez.com for further details. He is brilliant and honest and very ethical.

However, if I had brain cancer I'd be off to Texas to see Dr Burzynski http://www.burzynskiclinic.com/ who is also an MD with a great track record. I have read testimonials from his patients some of whom had Stage IV brain cancer and who have been in remission for 10 years. Dr Gonzalez knows Dr Burzynski and endorses his methodologies. God only knows why more people don't go to him - or either one of them. One reason could be expense, because Burzynski has to pay for his research and his facility from what he receives from patients and so his treatments can be expensive...however, what is money without health? And your husband might be accepted into a clinical trial which could be free. I wish Ted Kennedy had gone to him.) I would think that if you were diagnosed with brain cancer, you would have nothing to lose if you went to Dr Burzynski. He won't hurt you and he might help you whereas if you go the radiation/chemo route, it will hurt you and it won't help you.

Anyway, I hope this helps and that you find a way to combat your husband's cancer. Bless you and your family. Good luck. May you find peace on your journey.

Venice

entela
Posts: 2
Joined: Feb 2012

HI Beth,i need your help too,tell me the name of this medicine from Kosovo,my husband was diagnozet with GBM stage 4,he is 45 years old,please help me ,my e-mail is gezimosja2009@hotmail.com,im from Albania.Thank you!

entela
Posts: 2
Joined: Feb 2012

HI Beth,i need your help too,tell me the name of this medicine from Kosovo,my husband was diagnozet with GBM stage 4,he is 45 years old,please help me ,my e-mail is gezimosja2009@hotmail.com,im from Albania.Thank you!

Rustycat
Posts: 1
Joined: Aug 2009

Hi Bethanyd,

My Mum was just diagnosed on August 5th with GBM Grade 4. She had the primary tumour removed by surgery the day after and was home a week later. She just started a combination of radiation (5 days a week for 6 weeks) and chemo (Temodar) on Tuesday of last week. The chemo was making her sick for the first couple of days, but now the Maxilon (anti-nausea tablets) has kicked in, she's doing OK so far. It's early days yet though and the treatment makes her extremely tired.

I'd be interested to hear more about the Dr in Kosovo you contacted and also what medicine he told you to order. I also wondered, as I read your entry, whether your Dad was able to have surgery? I hope he continues to do well.

Rusty.

ritakron
Posts: 2
Joined: Feb 2011

Hi - do you have the information on the Dr. in Kosovo?
My mother was diagnosed with Stage 4 glioblastoma - please help!

JVis
Posts: 1
Joined: Sep 2011

Did you get the Dr's information from Kosvo? My mom is in the same situation yours is. Thank you!

Tiffany88
Posts: 1
Joined: Sep 2009

My mother was recently diagnosed with GBM Grade 4. Inoperable. Is there any alternatives out there to buy some time. Please help me. I am very sad and desperate.

Beckymarie
Posts: 358
Joined: Aug 2009

Tiffany....very sory to hear about your mom. Know what you are going through as my husband with diagnosed in March. He went through the standard protocal of radiation and chemo and we are now on avastin. We are hoping to buy some quality time and overal he does seem to be doing okay. Wish I knew what the future will bring. Good luck to your mother. Stay strong.

sue Siwek
Posts: 281
Joined: Jun 2009

go to the nearest teaching and research hospital and get a second opinion. they will have the latest protocols to treat your mom. it is hard to deal with this she is your mom but, realize that she has been given an overwhelming diagnoses and you can direct her when she feels so helpless. don't know where you live so my suggestion is to google where the best place in your state or near your state for the latest treatments. you cannot accept treatment at a hospital that is not a teaching and research hospital. for instance, my husband was diagnosed with an anaplastic astrocytoma grade 3 and the drs. said he couldn't do much. my son got on line and found henry ford hospital in our state and his father has survived nearly 10 yrs. find the best hospital near you, this is important because if you go too far away the family support will not be there. we had an 1 and 1/2 hr. drive each way but it was well worth the drive. good luck. keep this site posted.

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