Recent Scan Results....

rescue911chick

Hi everyone! I got the results back from my scan on Friday.  The same lymph nodes are still enlarged but stable. He said I have one somewhere in my right side that I think is new, but I'm not sure of the exact location.  (My online chart's not allowing me in today so I don't know any specifics from the report) So we're still watching & waiting, but that's not getting to me like it did when this all started in February. My next scan is scheduled towards the end of May unless new symptoms pop up, but he said if it's lymphoma that I'm dealing with it's the indolent type & not to worry. He did order IV iron infusion because my iron is still low & it's going on 10 months since all of this started. He offered two 4 hour infusions or 6 one hour infusions. I took the one hour but realized that meant 6 IVs so I'm switching  it to the two 4 hour ones when they open tomorrow. If anyone has any advice/tips on dealing with this let me know. I work the next day so I'm hoping it won't make me too sick.

My main question is this...  Did any of you start out with indolent lymphoma that decided to suddenly go haywire? I want to know what to expect or look for so I don't worry about every little pain or symptom that seems new. I've had pressure in my chest & my lips have turned blue a few times but the doctor didn't seem concerned about that since those lymph nodes in there haven't grown. And with these nodes being enlarged for 10 months it seems to me that a virus is a less likley cause vs lymphoma at this point. Thoughts?

Hope this finds all of you well!

Max Former Hodgkins Stage 3

Welcome Back...

Hey Rescue !

I know you have been dealing with this a long time. Let's assume this is not lymphoma, since your doctor seems to feel that it most likely is not.

There are over 30 types of lymphoma (five common HL, and 25 or more relatively common NHL variants). Most new lymphoma cases are NHL, at around 70%.  In addition, there are various extremely rare subtypes, such as T-cell disease, and others.  As you have apparantly been informed, these range on a continuum from very aggressive, to moderately aggressive, to indolent.  A given type will usually maintain its "average aggressivelness," since it continues to always consist of the same cell types, at least unless it morphs into a differing type of disease (rare, but possible, especially post-treatment).  Hence, it is very unlikely that IF you have an indolent strain it could later become "aggrressive."  Worrying about somethng like that, without having ever even been diagnosed with cancer at all, seems extremely unfounded.  "Mantle" lymphoma is one strain that can alternatively exhibit aggressive / indolent growth rates, but mantle is uncommon generally, and mostly occures in the relatively elderly.

I had a very indolent HL.  It was discovered more-or-less by accident, during a heart scan.  But it was very wide-spread. I asked my oncologist, since it was a "lazy" strain, if I might have had it a year, and he said "Yes, and  maybe a lot longer than that."  So, IF you have indolent lymphoma,  there is virtually no chance it would magically become virulent.   He then told me that I would begin my first infusion in two weeks.  I asked if I should wait that long, and he said that with what I had, two weeks' wait would be wholly irrelevant.

You mention needing iron infusions, and I had low iron less than a year ago, about three years after treatment ended. The doc was concerned, but no blood test markers looked like cancer, and he sent me right away for a colonoscopy, since bleeding is the most common cause of low iron (he said).   The colonoscopy was fine, and in effect he described the iron defeciency as "unknown etiology" ("unknown cause").  He said that sometimes anemia can persist for years, with no known cause.  And, my cancer center has numerous patients come in for iron who have never had cancer. Some do this for years. 

 I did have to go for four iron infusions, and it seemed like each lasted about two hours.  It cleared the anemia, and he put me on an iron supplement pill, and I have not had a problem with iron again since.

 An iron IV is easy and painless. I had no side effects at all, so it should not affect you going to work the next day in any way.

Given your screen name, I am wondering if perhaps you are a dispatcher or paramedic ?

 

Tell us how the iron treatments go, and bless your Christmas Season,

max

.

 

 

rescue911chick

Max Former Hodgkins Stage 3 said:

Welcome Back...

Hey Rescue !

I know you have been dealing with this a long time. Let's assume this is not lymphoma, since your doctor seems to feel that it most likely is not.

There are over 30 types of lymphoma (five common HL, and 25 or more relatively common NHL variants). Most new lymphoma cases are NHL, at around 70%.  In addition, there are various extremely rare subtypes, such as T-cell disease, and others.  As you have apparantly been informed, these range on a continuum from very aggressive, to moderately aggressive, to indolent.  A given type will usually maintain its "average aggressivelness," since it continues to always consist of the same cell types, at least unless it morphs into a differing type of disease (rare, but possible, especially post-treatment).  Hence, it is very unlikely that IF you have an indolent strain it could later become "aggrressive."  Worrying about somethng like that, without having ever even been diagnosed with cancer at all, seems extremely unfounded.  "Mantle" lymphoma is one strain that can alternatively exhibit aggressive / indolent growth rates, but mantle is uncommon generally, and mostly occures in the relatively elderly.

I had a very indolent HL.  It was discovered more-or-less by accident, during a heart scan.  But it was very wide-spread. I asked my oncologist, since it was a "lazy" strain, if I might have had it a year, and he said "Yes, and  maybe a lot longer than that."  So, IF you have indolent lymphoma,  there is virtually no chance it would magically become virulent.   He then told me that I would begin my first infusion in two weeks.  I asked if I should wait that long, and he said that with what I had, two weeks' wait would be wholly irrelevant.

You mention needing iron infusions, and I had low iron less than a year ago, about three years after treatment ended. The doc was concerned, but no blood test markers looked like cancer, and he sent me right away for a colonoscopy, since bleeding is the most common cause of low iron (he said).   The colonoscopy was fine, and in effect he described the iron defeciency as "unknown etiology" ("unknown cause").  He said that sometimes anemia can persist for years, with no known cause.  And, my cancer center has numerous patients come in for iron who have never had cancer. Some do this for years. 

 I did have to go for four iron infusions, and it seemed like each lasted about two hours.  It cleared the anemia, and he put me on an iron supplement pill, and I have not had a problem with iron again since.

 An iron IV is easy and painless. I had no side effects at all, so it should not affect you going to work the next day in any way.

Given your screen name, I am wondering if perhaps you are a dispatcher or paramedic ?

 

Tell us how the iron treatments go, and bless your Christmas Season,

max

.

 

 

Hi Max!!

911 Dispatcher for 13 years 

They've ruled out everything it could possibly be except for lymphoma but they won't be able to confirm OR rule that out for sure until they biopsy some nodes from my chest. And they won't biopsy those nodes until they grow. So we wait. Indolent just means "slow growing" correct? The doctor said if they grow AT ALL they'll come out since they're in my mediastinum & there's not a lot of extra room in there.  But if they don't grow he doesn't want anyone cutting into my chest because it's not worth the risk if I'm stable. So he has me repeating the CT scans every 4 months or so to keep tabs on it. The waiting isn't really all that bad now that I know whatever it is it's not going to get ugly quick if that makes sense. It could be worse and I'm very aware of that. And I'm thankful it's not because I know a lot of people aren't that fortunate.

They did all of the GI tests for bleeding, those came back fine. They even did a sleep apnea test to see if that could be causing my extreme fatigue but that came back ok too. So we're doing the iron infusions to see if that helps because pills didn't fix the problem. My iron's never been low until this past year, but then again I am getting older & our bodies tend to change on us anyway. Still waking up drenched, but it is what it is.

Thanks for writing back, I wondered about you last time I checked in & didn't see you. I pray you have a safe, happy and healthy Christmas season!!

 

illead

Peace of mind

Well, at least you somewhat know what you are dealing with and it sounds like you have a good doctor who is really "on the watch".  I'm sure that is a big relief. We know you will keep us posted.  So happy you can get on with your life, sure wish you didn't have to deal with the night sweats though Ugh!  Always thinking of you, Becky

 

Hey Max,

There you go again, Mr encyclopedia.  You are right about Mantle Cell being aggresive/indolent.  We think Bill had MCL for a long time before dx and so do the doctors, then with no warning, it came on like gang busters.  Here is an odd thing.  In 2000 he had about 3 weeks of extensive dental work done in Mexico.  The dentist was very thorough (much more than in the states).  She made a statement to him that I never forgot, "you have a deep dark problem in your body" ....... hmmm.  Who knows?  You are also right about the relatively elderly...ouch 

Becky

Max Former Hodgkins Stage 3

illead said:

Peace of mind

Well, at least you somewhat know what you are dealing with and it sounds like you have a good doctor who is really "on the watch".  I'm sure that is a big relief. We know you will keep us posted.  So happy you can get on with your life, sure wish you didn't have to deal with the night sweats though Ugh!  Always thinking of you, Becky

 

Hey Max,

There you go again, Mr encyclopedia.  You are right about Mantle Cell being aggresive/indolent.  We think Bill had MCL for a long time before dx and so do the doctors, then with no warning, it came on like gang busters.  Here is an odd thing.  In 2000 he had about 3 weeks of extensive dental work done in Mexico.  The dentist was very thorough (much more than in the states).  She made a statement to him that I never forgot, "you have a deep dark problem in your body" ....... hmmm.  Who knows?  You are also right about the relatively elderly...ouch 

Becky

Merry Chrsitmas

I am less than a decade behind !I was speaking of relative ages and when certain diseases most commonly occur, but Iam sure you know that.

I had a stranger walk up to me at work last year and tell me, with no introduction, several of the details regarding my birth and delivery .  These were EXTREMELY uncommon particulars, that not even my siblings knew of.  You never know how people get their "information."

illead

Max Former Hodgkins Stage 3 said:

Merry Chrsitmas

I am less than a decade behind !I was speaking of relative ages and when certain diseases most commonly occur, but Iam sure you know that.

I had a stranger walk up to me at work last year and tell me, with no introduction, several of the details regarding my birth and delivery .  These were EXTREMELY uncommon particulars, that not even my siblings knew of.  You never know how people get their "information."

One more thought

About the dentist, she made the statement due to the fact of what she was detecting from all the work she was doing in his mouth.  Right before his dx, he was having some foot reflexology, again in Mex, and the lady alarmingly said "your stomach!"  A month later his ct scan showed his spleen 27x24 cm.  In his infinite wisdom, I guess our Creator gave the whole body the ability to detect important things...........and some believe we all got here by an accidental fluke!