Newbie with very little support

Max Former Hodgkins Stage 3

kerg99 said:

New supporting husband

Hi guys

What an insane week. My wife went to Dr last Wed with a mild cough. He was a bit concerned so he took a chest X-ray which found a fairly large mass in her chest.  After a whirlwind of CT, PET and biopsy, we found out she has Primary Metialstinal B Cell Lymphoma. The mass is shockingly large at 15 CM x 8 CM. ive actually been very impressed with how fast they have moved here. We are at Walter Reed innDC and they’ve been impressive. She started DA-EPOCH-R today and seems to be tolerating it well so far. I don’t think it’s really hit us yet what this all means. My question for all you great warriors, what can I do to help her through this?  What would you guys want from your spouse or loved ones?  I’ve been reading a lot about this, and I’m getting there, but I know you guys have lessons. She’s 39 and in good health. She didn’t have any b symtoms, though she’s had a rash for 4 months that im convinced is related. It’s a big mass but only in one spot so sounds like it is stage 1 or 2. All the reports sat EPOCH is going to crush the lymphoma, but holy smokes.  

 

Anyways thanks for the sounding board and Crittermama, your story is inspiring with how fast your growths seem to have shrunk. thanks for letting he newest newbie crash the party. 

Mass

kerg,

I must ask what is your wife's Stage ?   Was her bone marrow biopsy negative ?  With a PET completed they know her Stage now.  From your write-up, it sounds as if the known cancer consists of only the one huge tumor, nothing else. Extremely rare and odd if correct.  Lymphoma is by its nature a systemic disease, that travels all over the body, which is why it must be treated systemically; i.e., with chemo.

At times with a huge mass, oncologists will supplement the chemo with radiation (a practice known as "debulking"), especially if adjacent organ crushing is threatened. I myself was diagnosed in this manner:  No one suspected I had any disease, until severe heart pain showed that the heart was compressed by massive adjacent nodes.   But debulking is used only as-needed, and not the norm.  And adding radiation to a chemo combination increases the chances for a subsequent leukemia to develop years later.

R-EPOCH is commonly very harsh, and many patients have to receive at least parts of it as an inpatient (ordinarily 3 or 4 days in hospital, then returning home until the next set), but this is not true of everyone.  But do be aware that moving infusions to an inpatient setting is a possibility later on.  "DA" just means "dose-adjusted," meaning that her doctors can increase or reduce her dosing at any time as they see necessary and beneficial.

Best of luck to you both,

max

DJS628

CritterMamaLori said:

Education has been good and bad

Hey kerg, 2018-02-22

Education helps somewhat but when I got here I figured out that no one is the same, results aren't the same and side effects are so different. It's good to be here for the support and to know you aren't alone in this journey.

The best advice for you wanting to be supportive is knowing what I am putting my husband through as he is my closest relative and best friend. As he has pointed out to me, I can be kind of grumpy and tend to "take things out" on him. I don't notice this myself. I have gotten where I try to warn him that I'm not having a good day or I have a treatment coming up so don't poke the bear. It's easy to lash out but not mean to hurt the ones closest you feelings. Don't take it personal even if it is hard to ignore. It really isn't worth a fight or the stress you put your wife through when it can't be controlled sometimes. Hubby says, "It's a long, hard ride. Patience is a virtue." (Even when he doesn't have much to begin with.) Just be there. Let her know you will be there no matter what happens... even with frustrations of not knowing what's going to happen. 

Fyi~I'm not the pretty woman he married but it's only temporary. Once through the journey I hope to be a better person mentally and physically. 

I Hope Things are Starting to Get Somewhat Easier?

Hi CritterMama (love your name!),

 

Cancer is a scary thing!  Don't let anyone tell you that you have to be strong and brave and show no fear at any time!  If anyone tells you that, they obviously haven't been in our shoes.

 

Glad you found this site.  I just found it a few weeks ago & finally posted my first post about a half hour ago.

I also HATE needles! But with each appointment, procedure, etc., for some reason, I don't mind them as much.  I used to get so nervous just before a doctor's appointment, but now I just walk in without much fear any more.

Friends and family need to know that anyone who is sick (esp. with cancer!) will  have their bad days.  I remember being so tired after treatment and I snapped at someone/over-reacted to something they said or did. Afterwards I just told the person that I was sorry, but I was super tired and just need some time to rest.

Ask your oncologist if there is a  cancer support group in your area.  It has helped me greatly.  I know some people don't want to talk about having cancer, but I've found sharing what we've gone through really helps.  Eventhough we may have the same cancer, the treatment may be different, or your reactions to the treatment may be different.  But just talking to someone who has "been there" helps.  You are not alone!

 

I had stage 1 diffuse large b cell lymphoma in the fall of 2015.  I was in complete remission, feeling great during the spring/summer of 2017 (last year).  But it came back in July!  So I had R-Chop chemo treatment again, followed by intensive chemo therapy, then a stem cell transplant this January.  I am again, in remission.

 

Try to stay positive and take one day at a time.  Please keep posting.  I wish you well!  You have lots of supporters on here, rooting for you!

Take Care,

DJS628