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New to these boards. DLBCL diagnosed 11 months ago

Mankyle

Member
Congratulations, that's awesome news. My husband is getting a PET scan right now in the hospital... but he won't get the result until one week later. Hope we will have some good news too.
I cheated. My wife is a doctor and has access to the hospital's patient informatic system. She saw the PET images and the report as soon as the radiologist uploaded it to the intranet...
In normal circumstances I would have got the results in two or three days...

Thanks everybody

Now I feel as if a two hundred kilograms weight had been lifted from my shoulders...
 

andym

Super Moderator
Excellent!! It sounds like your body is settling down and it must feel like a few ENTs have been lifted from your shoulders.
 

fighterm

Member
Forty years ago I got one node enlarged, it was supposedly Follicular lymphoma. I was told to wait and watch. It got in spontaneous remission next year for about 15 years. Then it relapsed in exactly same spot as dlbcl. That was in 1992. After that treatment I had Follicular relapse several times. My last remission was only for 3.5 years. Now I have a couple of tumors which I am watching. I learned that follicuar lymphoma is one of the highly immunogenic tumors. So I am waiting for an immunotherapy trial in Canada that I would like. There are better trials recruiting now in the US. Maybe they come to us too.
 

Mankyle

Member
Hi there

Today I got my 18 months follow up and all blood tests were ABSOLUTELY normal. Haematologist has scheduled next PET (last one was in july) for next summer so from now on it will be one PET per year.

On the other hand and unfortunately the younger sister (17 years old) of a nurse friend of mine has been diagnosed with a primary mediastinal non Hodgkin lymphoma.
She had a HUGE mediastinal mass that almost collapsed her right lung and right ventricle.

She has already started R-EPOCH and for the moment everything looks good. At the beggining they thought if was Hodgkin's (mediastinal mass and younger age) but after pathology the diagnosys was changed to primary mediastinal NHL.

It usually has good prognosys, AFAIK, and her response has been good so we are all crossing fingers...

I still find amazing the huge quantity of good info and good people I have found in these boards...

Thank you all!!!
 

andym

Super Moderator
First of all, "all blood tests were ABSOLUTELY normal" is quite abnormal. My onc likes to say, "slightly abnormal is normal." But I guess your results are abnormal in a good way. Congrats.

Sorry about your friend facing this disease but I'm sure that this is where your hard won experience can help them. This isn't experience that anyone wants but passing it along can make life easier for others.
 

Mankyle

Member
Today is the 2nd anniversary of my first clean PET after 2 sessions of R-CHOP.

I will toast for you all to have an everlasting NED and for all your blood and imaging tests are "unremarkable"


Thank you for these boards. They have been (and still are) a source of wellbeing and happiness.

Thank you everyone!!!
 

limeylass

New member
Welcome, and sorry you are part of the club you really don't want to belong to.
The people on this forum have pretty much kept Scott in pretty good health for the past 10 years!
We have gained more knowledge from here than anywhere, have participated in 2 clinical trials which sadly, our local doctors were not aware of.
Stay strong and positive thoughts from here to Spain!
 

Mankyle

Member
Thanks everyone

In June I will have another PET. It will be the "almost two years after finishing the chemo" PET.

So far I'm doing well but yesterday I got horrible news. One of my uncles got diagnosed with ductal pancreatic carcinoma.

He wasn't feeling well and told him to do some blood tests. I think I have told before but my family has a clinical analisys laboratory. Mollecular biology, genetics and conventional lab. We are working with half a dozen asisted reproduction clinics doing preimplantational tests and some other thing...

Luckily and because I'm paranoid in all things regarding cancer I told the physician there to do all grastrointestinal tumoral markers. Two of them were discretely elevated and told so to my wife's middle sister, who is a grastrointestinal specialist.

She said to go to the gastroenterologist ASAP and we did so. He immediately was scheduled to get a TAC and there they found an small tumoral mass in the head, near the biliar conduct.
It seems it can be resected and I have moved earth and heavens to speed everything....

This is the seventh or eighth cancer in my family.
My grandpa died of prostate cancer. Strange thing is that they had resected the prostate 12 years before when they extirped his bladder because of infiltrating bladder...

My grandma died of Hepatitis C virus induced hepatocarcinoma. She got infected after receiving a blood transfusion during the 80s.

One uncle died of lung cancer 15 years ago (heavy smoker)

Same year and some months later another uncle of mine died of immunosupressors induced leukemia. He had a kidney transplantation, developed organ rejection, they increased immunosupressors and he died of acute mieloid leukemia.

Seven years ago my father was diagnosed with bladder cancer (stage I) and was successfully treated. He was operated the same day of the year I got my full remission PET-TAC. Now April 18th is our second birthday for both of us.

In 2017 I was diagnosed with lymphoma...


And this year my father in law was diagnosed with an "in situ" melanoma (stage I) and this uncle who has been diagnosed with pancreatic ductal carcinoma..

Now we feel devastated and yesterday I cried like 3 or 4 times. We have reasons to be positive of course. The tumour is very small and resectable and only those are the ones that go well.
The president of the spanish society of pancreatology works in one of the hospitals in the area and we have already contacted with him and biopsy and surgery will be probably scheduled for next week.

I remember now when I was diagnosed with lymphoma when everybody was telling me...
Ah.. don't worry. It's only a lymphoma!!

Cancer is cancer and a lymphoma can, and will try for sure, kill you.
But pancreatic ductal carcinoma is a bitch. It is like a death sentence..only 5% of patients live 5 years or more. This puts most lymphomas in perspective...

I think this moment deserves an Snoopy meme



We have to enjoy life everyday as if it was the last.. we never know when it will be our last.

Thanks everyone. If my experience with cancer is worth taking... I think that cancer makes us better persons. Since I discovered these boards I have met a whole bunch of good people.
 
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andym

Super Moderator
I get it. I've had a rough road but there was always somewhere to turn. A close friend just passed away from a refractory, relapsed breast cancer. With her form there really wasn't anywhere else to turn. They were hoping to start a new chemo just for palliative purposes for her last few months but she passed away the evening before the first infusion. It's all bad. There are just levels of bad and sometimes having the not truly horrible level is enough luck. Except for the fact that those close to us wind up with worse levels and that hurts too.
 

Mankyle

Member
Thanks Andy!!!
Life can be tough sometimes

In three weeks or so I hope I Will be posting that I have a big fat NED in my PET-TAC report!!!

Thanks everybody
 

zac495

Moderator
I love that cartoon. Friend of mine was diagnosed with stage 0 breast cancer. Makes me understand how people react to our "good" cancer (tell that to lymphoma mom or Elliott's wife etc) 😭

But I reacted calmly reminding her there are no good cancers, but some with more hope and options.

Interestingly they may treat her with double mastectomy as radiation to breasts can harm the heart.
 

Mankyle

Member
Yes...

I supose in some time cancer will be something like having a cold...
Some pills or a inmunotherapy shot and that will be all. My grandma died of Hepatitis C induced hepatocarcinoma...
Now 95% of C virus patients ger "cured"....

That was 25 years ago. Now she would have been cured and would have probably died of old age...

Technology advances but probably not fast enough for everyone...
 

Step2

Active member
So far I'm doing well but yesterday I got horrible news. One of my uncles got diagnosed with ductal pancreatic carcinoma.
My health insurance broker got a diagnosis of pancreatic cancer a few years ago and he is still going strong. Hoping for the best for your uncle--and you!
 

Mankyle

Member
My uncle's cancer is stage IA.
1.8 cms of diameter. On monday they will do a biopsy and gallbladder duct derivation

Then I think that comes a PET and the surgery and chemo.

I have two customer with pancreatic cancer and they are alive at the two year mark. One is doing well with stabilized disease but the other not so well.

We will see what future holds

Thanks everyone!!!


BTW Step 2...

These abstracts will probably be of interest for you. They discuss our exact type of lymphoma.

http://www.bloodjournal.org/content...D&utm_medium=cpc&utm_campaign=Blood_TrendMD_0

http://www.bloodjournal.org/content...D&utm_medium=cpc&utm_campaign=Blood_TrendMD_0

http://www.bloodjournal.org/content/126/23/2716
 
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