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New to these boards. DLBCL diagnosed 11 months ago

Mankyle

Member
Hi there

I just discovered these boards this week and I must say it's amazing the level of haematological knowledge some of the posters have. I have seen many experiences similar to my own and I must confess all of this kind of gives my strenght to keep on going without succumbing to despair.

I'm an man, 40 years old, and I live in the eastern part of Spain.
My story is quite similar to what I have seen here. One day I noticed a swollen node below my jawbone, while shaving. I went to the dentist, teeth were Ok.
One month later node was still there and a new one appeared next to it. Three weeks thereafter and two fine needle punctions, an echography, a large needle biopsy and a CAT I got the dyagnosis of DLBCL stage III A, confirmed through the CAT and a white cell immunophenotyping in periferic blood.

The doctors did an excisional biopsy of a 3.8 cms superficial node in the left side of my neck, an PA confirmed the dyagnosis. CD10+, CD20+, BCL-6 and partial BCL-2. There was some discussion between the phisicians because Pathologist declared it a High Grade Follicular Lymphoma with a dominant diffuse presentation while the haematologist considered it DLBCL. In the end both of them are high grade and are more or less treated the same.

I started R-CHOP 21 in March, and there was an excellent response. All nodes halved in just one week, and weren't noticeable after two weeks.
After the second session I got a PET and I was declared NED. I finished chemo at the end of June, got another PET in July, which was clean, got two more sessions of Rituximab (last one in the middle of August), and another PET in October (also clean).

Last week I got the 6 months after treatment control (with PET) which came also clean...

But.....

Three weeks ago one submandibular scarred node I had known since the beginning of this process started changing. It had been rock-hard since the chemotherapy and suddenly it has started to feel suppler. Also the left side of my neck (where the surgical scar is) has started aching and the area feels funny.
Lately weather has been colder here so I initially thought it was just the weather messing with the scar tissue. I wasn't very worried about the node either, cause it is still less than a centimeter and didn't have a high SUV in the latest PET.

Nevertheless, it is very difficult to control the anxiety.

Tomorrow I have an appointment with the Haematologist so I will ask him his opinion.

Guys and gals, reading you stories is a REALLY good help.

It certainly sucks to be in these boards but it's also good to share experiences with people that have lived (and is right now) living the same situation than you.

Thanks, people!!!!
 
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cocamoxb

Member
Mankyle,

As with all of us, we are happy to welcome you here to the boards but sorry you had the need to find us.

I had Double Hit DLBCL with a 7cm tumor next to my right kidney and bone marrow as well. So I was considered stage IVA. I completed my treatment in September 2016 and have been NED since.

Regarding your concern about the aches and feelings around the locations, I too have had random aches and pains at my tumor site as well. It aches sometimes in front by my stomach. Sometimes around the back. Sometimes on the side. At first it caused my anxiety almost every hour. Once I learned to understand it, I've calmed down quite a lot.

The other thing that my oncologist told me upon my 2-3 round of treatment was that the tumor has created a tear in my abdominal muscle wall. So that meant that now that I'm NED the scar tissue is still in the muscle tissue. This explained why the aches never truely go away. They come and go.

I would suspect you may have the same scar tissue symptoms as I do. Some people get treated and the scar tissue goes away. Some have it for many, many years.

I was 38 at DX and I'm 40 now. So we're both NED and ready to live to be 80+!

All the best, and again, welcome!

-Harry
 

Mankyle

Member
Mankyle,

As with all of us, we are happy to welcome you here to the boards but sorry you had the need to find us.

I had Double Hit DLBCL with a 7cm tumor next to my right kidney and bone marrow as well. So I was considered stage IVA. I completed my treatment in September 2016 and have been NED since.

Regarding your concern about the aches and feelings around the locations, I too have had random aches and pains at my tumor site as well. It aches sometimes in front by my stomach. Sometimes around the back. Sometimes on the side. At first it caused my anxiety almost every hour. Once I learned to understand it, I've calmed down quite a lot.

The other thing that my oncologist told me upon my 2-3 round of treatment was that the tumor has created a tear in my abdominal muscle wall. So that meant that now that I'm NED the scar tissue is still in the muscle tissue. This explained why the aches never truely go away. They come and go.

I would suspect you may have the same scar tissue symptoms as I do. Some people get treated and the scar tissue goes away. Some have it for many, many years.

I was 38 at DX and I'm 40 now. So we're both NED and ready to live to be 80+!

All the best, and again, welcome!

-Harry
Thanks mate

It really gives confort to receive support. Its scary but having had an excellent response to R-CHOP and a clean PET after just two session gives me confidence.
Plus the fact I got a PET 8 days ago and the node didn't register as suspicious. I had a cold one week before the node started changing so that could explain the changes.

Anyway, it there is something to be done I will know it soon

Thanks everyone!!!
 

cocamoxb

Member
Thanks mate

It really gives confort to receive support. Its scary but having had an excellent response to R-CHOP and a clean PET after just two session gives me confidence.
Plus the fact I got a PET 8 days ago and the node didn't register as suspicious. I had a cold one week before the node started changing so that could explain the changes.

Anyway, it there is something to be done I will know it soon

Thanks everyone!!!
I actually got sick for the first time since treatment about 3 weeks ago. The first time ever in my life, my lymph node on the right side of my neck grew a little. Before treatment, I've been sick many times with colds, chicken pox, etc. Never had a lymph node change or become noticeable.

From everything I've read, if a lymph node is sore to the touch it's HIGHLY unlikely it is anything except a cold\infection\virus\etc.

Mine only enlarged for about a day and it's back to normal since that one day.

Let us know how your appointment goes.

Cheers!
 

andym

Super Moderator
Welcome to the forum. We’ve seen a lot of cases where people thought they were relapsing only to have it turn out otherwise. I’ll be hoping that is the same for you and I think the really rapid response makes it likely that it will turn out well.

But it is still hard to control anxiety and worry. It can take some time and, hopefully, some good experiences when worries come to mean nothing important.

Let us know how things turn out as you learn more.


Sent from my iPad using Tapatalk
 

Mankyle

Member
Thanks Andym

Wow... seeing your signature you're a real survivor.

Well. The haematologist and the maxilofacial surgeon who did the excissional biopsy (the node was right over the left external jugular vein) are both in the opinion that there is only a lone, less than 1 cm, isolated node. I also have an small inflammation of the submandibullar salivary glands but nothing to worry about, they say.

Fortunately I have the possibility of doing a CBC + Periferic Blood Immunophenotype whenever I want (my family has a clinical analysis lab) so if there are any B-Cells (there weren't any two weeks ago) I will know by tuesday.

Their answer has been not to worry but it is certainly extremely difficult to appease my mind.

I cannot possibly imagine what you had to endure, Andym. Me I have had a really tough year. I got married in 2016, and I got my first chemo two days before my wedding's aniversary.

We will see. I hope I will get the results next week. Meanwhile thanks for the support.

Cheers mates
 

andym

Super Moderator
We endure what we have to endure one step at a time because life is great. And my signature doesn't show the great things that happened during those years and there were lots of those.
 

po18guy

Active member
How not to worry? It seems that a node which is becoming softer is not going malignant. And scars? The nerves go through various stages of healing and regeneration. Pain or other sensations may be involved with that process.

Mostly, what you are experiencing is called "noise" - small little things that cause worry and which we hope is not lymphoma again.

Have you ever gone to MD Anderson in Madrid? Interesting that a US cancer facility opened a branch in España.

http://www.mdanderson.es/
 

Mankyle

Member
Well....

I have a good relationship with the Haematology unit of the hospital that is treating me, mainly because they send part of the special analysis to our lab (mainly genetics and some mollecular biology) so I knew the doctors before I got diagnosed with LNH.
In fact the youngest physician of the unit studied Medicine with my wife (my wife is a cardiologist).

As we have such a good relationship they put me in contact with two other hospitals (one of them the second biggest hospital in Spain and the biggest one in my region) to ask a second opinion and in all cases they agreed in treatment and how to face the disease.

Nevermind....
I went yesterday (for the first time) with my wife to a cancer support group and it was a great experience, and helped me to relativize things. Compared to the situations other people is living, my cancer is like a fart in the wind....
There are truly horryfying stories out there. The next patient after me treated of Lymphoma (in this case I think a PMBCL) in my hospital is a young 27 years old girl, 4 months pregnant, with a HUUUUGE mass.
She had to interrupt her pregnancy, receive radiotherapy, chemo Rituximab and everything...
It was her first child and there was simply no time to freeze eggs so she could at least receive an In Vitro Fecundation in the future in the case she ends up sterile from the treatment...

I talked to her twice while receiving chemotherapy (we used to go to the hospital the same day of the week to get the chemo) and she explained me the story. I think she's doing well but at that time she was devastated...

I think, things could always be worse....
 

po18guy

Active member
My jaundiced eye's view

Well....

I have a good relationship with the Haematology unit of the hospital that is treating me, mainly because they send part of the special analysis to our lab (mainly genetics and some mollecular biology) so I knew the doctors before I got diagnosed with LNH.
In fact the youngest physician of the unit studied Medicine with my wife (my wife is a cardiologist).
OK, here's the deal: I would much rather have an excellent doctor whose bedside manner was insulting, than a friendly, backslapping doctor who would gladly cancer morning appointments to attend my funeral. Go for the expertise, not the relationship.

Just saying.
 

Mankyle

Member
Absolutely right there.
Sorry. Maybe because english isn't my first language I have not explained myself.
Things is Spain are not like in the US because it is a public health hospital. With good relationship I mean that he has dedicated more time to me than to the average patient, has arranged things for me to get a second (and a third) opinion and has told me that he knows in person the chief of the two haematology units in Spain that are right now participating in CAR-T studies.

Sorry for no having explained myself well
 

po18guy

Active member
Absolutely right there.
Sorry. Maybe because english isn't my first language I have not explained myself.
Things is Spain are not like in the US because it is a public health hospital. With good relationship I mean that he has dedicated more time to me than to the average patient, has arranged things for me to get a second (and a third) opinion and has told me that he knows in person the chief of the two haematology units in Spain that are right now participating in CAR-T studies.

Sorry for no having explained myself well
¡Entiendo!
 

andym

Super Moderator
Agreed too. A good relationship can mean that there is mutual respect with excellent communication so that concerns are noted and taken seriously. One reason that I didn’t explore other treatment centers for my transplant was that both my wife and I have “street cred” at Stanford and I knew that if we said something it would be taken seriously. And we definitely saw that happen. When I needed R for GVHD, my wife has my protocol for what works for my infusions and the nurses who know us would immediately approve it and tell newer nurses to trust her and do it.

Of course, I think most of us have the experience that the very top experts are also very kind as doctors and listen well.

I will also say that my community oncologist has the best clinical skills of any doctor I’ve seen. But then she’s been in the clinic seeing patients every day of her career rather than 4 days at the lab bench and 1 day in the clinic, per week, like many researchers. And I know that she turned down being a researcher at a top center in order to be in a community setting seeing patients as her only job. She knows my body like no one else. And like Mankyle’s doctors she has ties to Stanford and the doctors there.

So, there are many types of top doctors and what has worked for me is being able to have a team that combines those different types. How to balance ones team may also depend on the rarity of the type. Rarer, harder to treat types, will need to head toward the top research centers.


Sent from my iPad using Tapatalk
 
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Mankyle

Member
Well
I've been working in the med tech industry for 17 years now and if there is something that is clear to me is that thanks to internet, the "up to date" pages, the webpages where one can check medical information, the availability of information, and how easy is right now to travel from Europe to the US and vice versa, in this times we are living in, one can be treated in most developed countries following the latest protocols and accepted guidelines.
Almost all of the chemotherapics are available in developed countries and only the experimental drugs o monoclonal antibodies available only through trials are an exception.

For example CAR-T is being done in Spain only in two hospitals. Auto and Allotransplants in my region are centralized in only one hospital and all pacients are automatically derived there in case they need one.
Other therapies depend...

But things are advancing really, really fast...
In 10 years things will be unrecognizable with the plethora of new treatments and strategies that are to come....
 

zac495

Moderator
Hello There,
Sorry to just get in to welcome you to our friendly forum. So often scar tissue does cause pain - I know that happened to me and it was quite frightening - right before the transplant - and then again a year later.

Anxiety is normal. A good attitude helps with anxiety. And a great doctor who cares for you is probably the most important of all.

Here's to scar tissue - and please let us know.
Hugs,
Ellen
 

andym

Super Moderator
Here some treatments are also somewhat localized. For instance, many people are treated in what are called community clinics where the doctors are not researchers. New drug trials are largely available at research centers such as university hospitals. And transplants are also that way. For instance, a group called Kaiser is a very large group of hospitals and clinics. But in my area, when their patients need a transplant they are sent to Stanford. So there are some similarities.

And when I was first diagnosed there was a vaccine approach that was in trials in the US but Spain had ruled that it wasn’t a drug because it was partially derived from our own cells. There was one doctor studying it and also doing it for a fee in Pamplona. So, I traveled there to meet with him. I stayed out of the trials here and Pamplona was my backup in case there was a gap between when I wanted it and when it became available here. However, the trials here failed and those approaches are still under development.

So, I agree that it is very global now.


Sent from my iPad using Tapatalk
 
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Mankyle

Member
Hi there...

I got a CBC, Flow citometry, an echo in the neck and I also went to the dentist to rule out teeth problems.

Everything looks good. No relapse.
Haematologist told me that if I had a lymphoma with all these results I surely deserved to be hit in the head with a BIG hammer.
 
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