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shares a daughter

CNS LYMPHOMA

MY FATHER (61) WAS DIAGNOSED WITH CNS LYMPHOMA ON JANUARY 5 2003. AT THE TIME THE DOCTORS SAID 30% SURVIVE 3-5 YEARS. HE HAD 10 WEEKS OF CHEMO ( HIGH DOSES OF METHATREXATE). HE HAD AN MRI MARCH 26, FROM THERE THE DOCTORS SAID THE CANCER WAS STILL THERE. THEY COULD DO RADIATION FOR 28 SESSIONS WHICH WOULD ONLY GIVE HIM 1 YEAR. MY FATHER DID THE RADIATION, HE LOST HIS HAIR AT THAT TIME. DURING ALL TREATMENTS MY FATHER NEVER GOT SICK. I BELIEVE HE HAD 2 TIMES WHERE HE GOT SICK BRIEFLY. WE ARE AMAZED HOW WELL HE DID WITH ALL HIS TREATMENTS AND MEDICATIONS. 

MY SISTER TOOK HIM TO ALASKA FOR 5 DAYS, WE SENT HIM AND MY MOTHER TO HAWAII FOR A 7 DAY CRUISE, MY SON AND I FLEW DOWN SURPRISE THEM AND SPENT 5 DAYS, WE RETURNED ON JULY 10. JULY 11 THE DOCTORS DID AND MRI AND TOLD US JULY15 HE WAS AT THE END OF HIS ROPE AND ONLY HAS 2WEEKS TO 4 MONTHS. IN 4 DAYS HIS CONDITION GOT WORSE HE BARELY COULD WALK, ONE WEEK LATER HE WAS NO LONGER ABLE TO COMPREHEND CERTAIN THINGS, FOR LACK OF A BETTER TERM, DEMENTIA WAS HAPPENING. THIS WENT ON FOR 3 WEEK. SUNDAY AUG 3, 2003 5:17AM MY FATHERS FIGHT WITH CNS ENDED. IT HAS ONLY BEEN 16 HOURS AND 

I MISS MY FATHER TERRIBLY. MY HEART IS BROKEN AND THERE IS NO ONE TO FIX IT. HE WAS A GREAT MAN AS I'M SURE EVERYONE'S LOVED ONE IS. PLEASE TAKE MY ADVISE AND WHAT EVER TIME THE DOCTORS SAY YOU HAVE MAKE THE BEST OF IT. FOR YOU SEE THIS IS A VERY RARE CANCER AND NO ONE REALLY KNOWS ANYTHING ABOUT IT. AND I  ( UNABLE TO FIX BROKEN HEART0 (AUTOSLAYER@MSN.COM)PLEASE CONTACT ME IF YOU HAVE QUESTION, THERE WAS NO ONE FOR US.        8-4-03

I'm so sorry to hear about your dad.  Sounds like he was a very special person.  I just wanted to know if he might have had a serious flu ... or if you know of any exposures to 2-butoxyethanol?

CNS Lymphoma would be 'the kind of thing' that 2-butoxyethanol would cause, as it damages the Central Nervous System & causes memory loss early on

 
Was your dad in the military? 
This cancer & related cancers may not be all that rare. 
 
Not everything 2-butoxyethanol does gets diagnosed for everyone
 
Anyone in family line with Chronic Fatigue Syndrome symptoms?  especially CFIDS ?
 
We need to pay more attention to this
 

Source  ACS discussion forum ...

CNS Lymphoma - another daughter shares

(I have permission to share this, however, all contact info had to be removed)

since deleted by author from ACS post:

I did finally find someone who's gone through precisely the same thing as I have. I wrote something to a doctor I have it saved so if you don't mind please read through it. Thank you and please contact me.


Dear Doctor,

My father has passed away on the 28th of Feb this year. He was sufforing from Non hodgkin's lymphoma in the brain. The specific type of lymphoma was CNS (Central nervous system) PAD, B-cell lymphoma. In our opinion he was treated very badly here in Finland, especially in the early stages and we want your opinion.

 

He's first symptoms were extreme tiredness and he's ears starting to ring. This was in early fall 2001. He was a very temperamentful person, but at this stage he got tantrums much easier. This was a characteristic of his, but of course it started to get worse. He went for checks to ear doctors who said that there is nothing wrong with him and if it continues he should return after Christmas. He also went to the regular doctor during this time who performed blood tests but could not find anything wrong with him and said that everything is fine. usual things that exited him did not excite him anymore. Such as going for Christmas to Athens as we did every year, that used to be a thrill for him, he said he didn't like so much anymore.

 

After we went there for Christmas and we started noticing that he has changed severely, he booked a time with a neurologist right after we returned to Finland. He took a scan of my father's head and said that the scan shows something white in his head. Like a white liquid, but not to worry because according to him it was at least not a tumour (cancer). This news was a big relief to the whole family. He then said he would book my father for tests at the hospital to find out what the white liquid was.

 

My father had notified this neurologist that all dates were to be ok except for 4 days at the end of Jan when he was out of town. Of course this was the time my father would have been scheduled for the tests. So the tests would take place in early March.

 

We decided to wait for this date. We were sure that he did not have cancer or anything else as dangerous because of what the neurologist had told us.  Weeks passed and my father's health was deteriorating significantly. He started walking as if he was drunk. He's loosed his balance while walking. At work he trembled, he was involved in small car accidents. He stumbled over furniture and we and him did not know what was wrong. In early March when he went to the hospital, he was immediately taken in. The doctors said it might be adem-virus, tuberculoses in the head or additional nerv sicknesses.

 

After two weeks he was released back home. They said that he is recovering but it will take time. He walked with a roll on. After a few days at home, he fell and that is when we lost his walking ability. After this he was rushed back to the hospital. The doctors told us that this is something very serious, but that they do not know what it is. They ran more tests which brought no results. At this point my father did not say much anymore, it had severely affected his brain.


He spent a month in the Hospital whereafter, they came to the conclusion that they have to perform a biopsy. They said that all this time passed because it is the final thing to do, because it is so dangerous to enter somebody's head. He was transferred to a different hospital where this was performed. At the very same day the doctor told us what he had, in front of my father. The doctor told us it is cancer and more a bad sort. He said that it is, however, treatable, and very responding to radiation therapy. He received radiation therapy and was transferred, yet again. He received the maximum dosage of 10 times, not risking him becoming brain dead. They said that everything went well and that now all we can do is to wait for him to recover and that this will take time and that we have to have patience.

 

In the middle of June he was released back home. This time however in a wheelchair. He got his speech back. But he was not fully clear anymore. We suggested giving him chemotherapy. The doctors said that under no circumstances can this be done. The patient needs to be in walking condition at least.

 

We waited waited waited and he had physical therapy, but he was all the time very tired. At the end of October he went for another scan and they told us that the cancer is coming back and that there is nothing to do anymore.

 

They said that they will not give him further radiation therapy and this is the only place in Finland that is elligeble to do this. We then contacted Sweden and they adviced us the same not to give him more radiation therapy cause he might die of it or become brain dead.

 

We then turned to the U.S. contacted MC Anderson in Texas, the Sloan Kettering Center in New York and John Hopkin's in Baltimore. We sent all of his information translated to English biopsys everything and John hopkins was the first to respond and urges us to give him a certain type of chemotherapy that is sensitive to the head lymphoma.

 

He got this two times but it did not help. The doctor told us that according to the latest scan it had spread even more in the head. He said in front of my dad that there is nothing to do and that he has very little time left in front of my dad. He was not able to move, respond, talk, barely swallow at this time. We took him to athens with an ambulance plane which was his dream to get there. the doctors we found were much more helpful and personal over there. The plane doctor on the way back shouted that he is at his last in front of his face. And we think this is terrible wrong.

Now this is our story. And we want your opinion as to the following.

1. Did the doctors do everything here in order to help my father.
2. Would you suggest us to sue the hospital?
3. Give us something that could cause this terrible terrible disease assumptions is good and the things that are likely.

We ponder between: cellphones, he hit his head accidentally numerous times, he had a terrible cough that the doctors did not know what it was due to that lasted 6 weeks for many many years earlier, stress. He was very stressed at his work because of C.E.O. responsibilities.

How long could this disease have been there before we found out about it?

8-7-03

" ... he had a terrible cough that the doctors did not know what it was"

This may be a sign of too much of some kind of chemical poisoning or overexposure

all the time the cough was going on ... he could have been getting a chemical exposure that led to this end health result ... whereas if he could have 'pinpointed' the source of exposure, and stopped it, he may have never gotten to this extreme health concern of CNS Lymphoma

Notice how something else gets the blame:  cell phones?  stress?

All I can say is "it is the kind of thing' that 2-butoxyethanol would cause ... with the other 'odd assortment of symptoms (such as CFS symptoms) accompanying

6-25-05

How does your body 'complain' about too much of some chemical?

Could this be one of the concerns that CFS could cause?

If so, check this for THE FATIGUE of CFIDS

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