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My second husband with Brain Cancer :Inoperable DIPG

vschiff's picture
vschiff
Posts: 6
Joined: Jan 2017

I am looking for anyone who has dealt with adults with DIPG.   A lttle background, I have a deceased husband who passed away after fighting 1 year and 10 days with GBM IV in 2002.  My current husband has been diagnosed with dipg, even though it is supposed to be low grade, the hystology suggests aggressive form.  According to our Neuro oncolgist, his is a rare form of the rare form of DIPG.  He is 60 years old, doing pretty well, but struggles with balance, headaches, and fuzziness in his head.  He has had 30 radiation days with chemo and continues with chemo oral 5 days a month.  We have been battlling since the end of June, so about  6 months.  Since I have lost a husband already to brain cancer, I refuse to give up.  I would like to hear if any one out there has had great success with treatments of the oral temador....  Please.  

ccfighter
Posts: 476
Joined: Jan 2012

I'm sorry you have not had any responses.  I'm sure the rare of the rare leaves few with advice.  I don't have brain cancer but a different cancer.  I just wanted to say my hopes and prayers are with you, and to never give up.  Educate yourself, make informed decisions, and direct your own care.  Hugs.

vschiff's picture
vschiff
Posts: 6
Joined: Jan 2017

ccfighter, thank you for your response.  It truly is a tough battle.  The rarity of it also leaves room for many advances, as well.  We NEVER give up because we KNOW who holds our future.  We know that because of the type and rarity that doctors are always looking for answers, too.  We don't feel alone in this battle, and honestly would not really want anyone to walk in our shoes.  :)  I am always reading and there are a lot of things on other kinds of brain cancer, but not this one....  :(

 

satchmo
Posts: 1
Joined: Feb 2017

Dear vschiff I'am sorry to read your husbands diagnosis as I have been travelling a simular path in life..I live in Queensland, Australia and was diagnosed 5years ago with a pontine glioma growing into the midbrain .My treatment has been watch and wait with a now yearly MRI that has shown no change for about 2 years. The tumor was discovered when a closer look of a annuerysm of my bassilery artery near the brainstem was required via a MRI. The diagnosis explained a lot of strange symtoms I had been experiencing for around 2 years prior. 2 years after diagnosis a spinal thalamic disturbace was diagnosed after losing touch and temp in my right arm and leg and left side of face, I also have a impaired gait that is been with me since about 1 year after diagnosis. My annuerysm has been stable since discovery. My advice is accept life for what it is and it is sometimes short. I was given between 5 and 10 years to live, 5 at worse and 10 at best, I 'am now entering year 6. I continue to have a scotch and smoke and holiday as much as possible. After many years of reading of many sad terrible stories that all ended in the demise of patients with this condition I decided to just keep living and enjoying myself as much as possible. I still work as a house painter, a bit slower and harder yet still earn a living. This is not a battle against a cancer that can be won, as long as you do not regard death as a loss you win. Life is living, so get out there and live and make the most of your time left and forget about wasting the time you have left trying to buy more time, you simply can not.  The funds and time wasted looking for a cure with this condition is burning up the life you have left. I wish you and your husband all the best and hope you enjoy life rather than live in fear of the inevitible. My apology if this upsets you, but it is the best advice I can give. Maybe it might give you some food for thought as I do not fear death, as where were we prior to birth, the same place. Death is nothing to fear as we all end up in the same place along with all life on this planet. The chemo and radiation does more damage than good with this cancer in adults was the advice from my neurosurgon, Good luck to you both and remember to live life and love it

vschiff's picture
vschiff
Posts: 6
Joined: Jan 2017

Satchmo, I am with you 100% when you say live life to its fullest!  We have not put our life on hold.  However, I continue to work outside the home while my hubby stays home and paces himself.  He continues to get out of bed and take care of himself and tries to do things around the house (he currently is collecting SSDI).  We know that our days are numbered and do not fear death because we know where we will spend eternity.  Cancer Sucks, BIG TIME.  Your post did not upset me because I know that we have a battle to fight and fight we shall do.  Nutrition and exercize always plays a factor in our health, so we take care of our bodies as much as possible (we could always do better, tho).  So far hubby has been having more good days than bad, so I am hopeful that his tumor is shrinking.  :)  Actually, I will be disappointed if it has not.  But, again, WHO is in charge?  Not us.  Thankfully, because I make way too many mistakes.  :)  Take care of yourself, Satchmo, and good to hear that you are in your 6th year!!

2ndhusbandglio
Posts: 1
Joined: Jul 2017

i find myself looking for why. Two great men. Both great fathers and husbands. I ask who or what is to blame?  Me?  Our area?  Watching my second husband being stripped of his life after a brain tumor has already taken one husband. It is more than I can take   

 

clgoelzer
Posts: 6
Joined: Jul 2017

I am so so sorry to hear that you are going through this again. Nobody should have to go through this even once! In my belief system, there is no "why" - just random terrible things happening in our world. Of course you are not to blame! Is there any hope that your second husband will fare better than your first? I do hope so! You deserve some long term happiness!

Briskey's picture
Briskey
Posts: 2
Joined: Aug 2017

Wouldn't the Magnesium Chloride and Black Salve Blood Root zinc Chloride pretty much fight that stuff and eventually you become better. My mom had terminal brain cancer and did radidation and chemo but the doc gave her compound x that is the salve with blood root. Theres alot of salves but the good one is the blood root zinc chloride. I read these post because it surprises me how some of the things that work and do things for the body next to amazing are not highly encouraged or always well spoken of because of foolish errors. But common sense and evident facts and results it's hard for me to think it wouldn't help for every form of cancer. Magnesium like 99% of all americans lack because of our processed foods which are terrible.  Anyways that was my moms key to success the compound x black salve did it ...im not even sure what terminal means but it was sad times seeing her all cut into her head and wrapped up like a mummy in experimental treatments. I think many know cures to these things but it's sad times in a place full of greed. No doctor at a hospital would tell you this most likely ..what would they loose there license. Sorry if I speak as though im angry it's just sickening like cancer our medical field rules and practices are not what I find righteous.  About 30 years later my mom is alive and well and still taking the compound x and cancer has not returned. Oviously people that beat it with chemo and radiation it's like it always comes back ...somethings gotta keep it away ...seems compound x maybe the key wish doctors would study into a natural product and get everything out of it they can because so many are so thankful for it. 

Athena568's picture
Athena568
Posts: 6
Joined: Dec 2017

i'm in my 20s and was just diagnosed with a malignant midline glioma over the holidays. I'm glad to hear everyone has the same attitude; strength and positivity. I'm about to start chemo and radiation next week and am a little terrified. Any tips? It seems that anactdotally adults with this type of cancer do ok for longer?

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