Diagnosed with Diffused large B cell lymphoma

Dear Mainuh,

I am sorry you have joined this "club."  I am a 55 yr old female who has officially been in remission for about 15 months.  I also had DLBCL and if treated soon enough and with the best combination of chemotherapy and Rituximab, there is a very high survival rate.  I am not a doctor, but I have learned a lot through-out this process.  Although each of us may have our own unique experiences, with DLBCL it is very important to get the proper additional testing done to determine the pathology beyond just narrowing it down to DLBCL to get the best treatment possible.  The best initial advice I received on one of these sites was to get a second or independent diagnostic and treatment plan opinion from one of the 70 National Cancer Institute  (NCI-Designated) cancer treatment centers.   DLBCL is a very aggressive sub-type of Non-Hodgkin's Lymphoma and not something to mess around with when deciding upon a treatment plan.  My local "experts" where I live actually did not quite get my diagnosis correct and they did not offer the comprehensive and aggressive treatment plan that I was able to get at MD Anderson in Houston.  Anyway, I would highly recommend that you contact one of the NCI-Designated facilities and at least have them review all of your test results or better yet if you can manage it, I would make an appointment at one and get their expert opinion, especially since you have some other medical complications. Best of luck to you on this journey and please feel free to ask questions and update us as you move along this path.  Stay Strong!

begin your treatment tomorrow. I think it is very hard to wrap your head around a cancer diagnosis. It's something that happens to others, not you! And if it sounds cliche to say "take it one day at a time" then I apologize, but my experience has been that anticipating too much, too far in advance causes more stress and worry. Something you do not need. 

Keep positive, so glad you have a supportive spouse. 

I, too, am sorry you had to join this club but this is a great resource for support.  

Blessings to you!

Hello Manuh & anyone else reading.

i was diagnosed on March 19 th of this year & began r-Chop chemo April 18th. I am on my 3 rd round of 6 treatments & so far, the treatments are truly working. After my initial chemo treatment  I was admitted to the hospital 5 days later. Oncologist had me on 100 mg of Predisone and I didn’t handle the cold turkey drop 5 days later. I had developed a UTI, caught some Viral infection, had Neutrophenic Fever and absolutely no white blood cells, next to nothing in Potassium, my red bloods were very low & All my H&H levels were down & I had an extremely small amount of Neurophpilious. 2 units of blood, bone marrow building shots alternating in each arm & Bacrin IV & I was finally discharged 6 days later. Prior to all that I had a bowel blockage, a GI bleed. Pretty darn sick! 

Next round I chemo went 100% better. no reactions to the Rouxtin, only one time have I thrown up & that was while I was in the ER waiting for a room. It goes w/0 saying our energy levels are not the same as previously diagnosed. Within one week of chemo the large tumor on had on my transverse colon was 1/2 it’s original size. That was such a boost.  My next chemo treatment is June 6. It’s been difficult adjusting to the many restrictions regarding germ control. But, it is NOT worth the consequences. 

stay in touch, would enjoy hearing from another partner in this life altering crime, Lol. I’m new to this site. 

gsip

Hi Mainuh,

  So sory to hear about the complications after your first 2 rounds. Hopefully your 3rd round will go better and after radiation you can start the healing process. Keep us posted on your progress and I will keep you in my prayers and positive thinking. Treatment certainly keeps us off of our game, but eventually it will all get better. I had chemo brain quite often and couldn't remember what the heck I was doing from time to time. Be patient with yourself and remember you are not alone...it's the process we have to endure to get better. Best of luck to you, hang in there. Sue

FNHL-grade2 typeA-stage3-diagnosed June 2010-in remission

Mainuh said:

update

First, thanks for the encouragment and sharing of your experiences. Well , I have now gone through 2 rounds of R-Chop. I felt ok after the first round for a couple days except really didn't sleep well dueI think primarily to the prednisone. 3 days after the first session, I tried to drive myself to the hospital for an MRI and almost passed out on the highway. Ended up going to hospital by ambulance and was admitted. They kept me for a couple days and sent me home, then I was rehospitilaized for 4 more days due to fever and pneumonia in my right lung. I don't have a spleen, so my immune system is already somewhat compromised. Second round has been somewhat better. The good things are I am eating, drinking, peeing and pooping and have had no nausea. The bad things are the two hospitilizations and I have cognitive impairment, whether this is a form of chemo brain or not, I don't know, but I can't drive, have general confusion and trouble concentrating and a moderate to at times pronounced feeling of mental fogginess. I have not been able to work . I am hoping this clears up after my third session when the drugs clear out of my body. After the third session, I will have radiation therapy. Sorry for any spelling and typo errors, I'm not exactly on top of my game right nnow.

Prednisone is what first got me on this discussion board. I still remember how 2 days after I stopped taking it I felt like I hit a brick wall. One thing that helped me was to take a nap (2 - 3 hours) for the first 2 days after. It made that 3rd day not so bad. I had the chemo fog too. I usually went back to work about the 10th day after treatment. (Worked from home those days.) I didn't have to go on the highway and just took it easy when driving to work.   

The chemo drugs actually are in your systems for week. So what happens with each treatment it "adds" to what is still there. By my last 2 sessions of Rchop I was really dragging. Once chemo is over it does take some time before the drugs are really out of your system. This is a good site to look up info on the chemo drugs.  http://chemocare.com/chemotherapy/drug-info/default.aspx

Good luck Mainuh

mcarsten said:

Thanks for being honest here.

Thanks for being honest here.  I just found out that I have DLBCL and haven't even had my PET scan yet.  I must say that I certainly didn't want to be part of this club either.  To be honest, I'm still in the shock phase since I just found out 2 days ago.  Would you mind letting me know if you had hair loss?  It may be low on the grand scheme of things but imaging myself in wigs or scarfs is very strange.  Thanks!

 

I had follicular lymphoma and was treated with 6 rounds of R-Chop and 3 rounds of RICE. Lost my hair shortly before the second round of R-Chop. I decided not to get a wig since a wig would need more care than my own hair did which was just wash and dry. I went with getting caps. Also got some scarves to "decorate" the caps. Kept my head warm. It was fun to color co-ordinate them. Then there were days I would just wear the black cap because I was too weary to make a decision. 

Whatever you decide to do about the hair loss, have fun with it. It makes the day go better. 

mcarsten said:

Thanks for being honest here.

Thanks for being honest here.  I just found out that I have DLBCL and haven't even had my PET scan yet.  I must say that I certainly didn't want to be part of this club either.  To be honest, I'm still in the shock phase since I just found out 2 days ago.  Would you mind letting me know if you had hair loss?  It may be low on the grand scheme of things but imaging myself in wigs or scarfs is very strange.  Thanks!

 

mcarsten,

With DLBCL, you almost definitely will be receiving a combination of drugs known as R-CHOP, although in advanced cases, a harsher R-EPOCH is used.   Rarely, if you are Stage 1 with only a node or two, mostly radiation will be used, but even with radiation as primary, some chemo is added for systemic eradication.

CHOP, if you receive at least two infusions, seldom leaves any hair on a patient.  Longer-term application of chemo reduces the liklihood of keeping hair to almost nil; maybe one patient in a 100.

Like some others related above, hair loss, after a while, becomes less of a concern than other, worse side effects.  It is always meaningful, but not medically significant, and virtually always returns soon after treatments end.  I recall the day mine all fell out in huge handfuls. It was saddening, no way around it.

Over half of all the writers here have likely had R-CHOP at some point (I myself had other drugs), so there are a lot of folks here who can answer your questions as they arise.

Evarista said:

Shining, gleaming, streaming, flaxen, waxen...

Another 60's rock fan here!  Also another DLBCL survivor (2.5 years now).  Got the ugly R-EPOCH X 6 to boot.

To answer your question:  yes, I lost my hair.  All of it.  But it all** came back and I now have a full head again. I won't lie:  it was devastating, mostly because it happened so quickly after my first treatment.  But then I started playing with creative head coverings.  I happened to still have a collection of beautiful eastern European scarves, so started with those.  When I was able, I scouted some stores, but ended up buying things from Amazon (much less expensive). Etsy is also a good place for creative shopping. Made myself some sleep caps (head gets cold at night!), and bought a couple of nicer hats for dressing up. Took up crocheting to make lovely winter caps.

My head hair was visibly back within 3 months and the fact that I had ever lost it undetectable by 6 months.  I actually found the eyebrows and eyelashes more traumatic than the head-hair.  Those came out late in treatment and I was completely unprepared.

Tip:  if you have hair of significant length, go ahead and cut it shorter now.  I did a buzz down to about an inch when I first started losing it, but went ahead a took it the rest of way once it became clear that it was all going to fall out. Another thing that I did once I was recovered enough to be around people was attend one of these sessions:  http://lookgoodfeelbetter.org  It was very fun if there is one in your area.

You are likely to encounter a variety of challenges as you go through this journey.  Hair will be one of them, but like everything else, you can get through it. We are here and you can ask us anything! 

**Bonus:  underarm hair has never come back.  

There'll be a home for the fleas and a hive for the bees in my hair...  Well, today, not so much.

Was, and is a blow to my dignity and identity.  For some it may not be as big of a deal, but to me, it still makes me angry. Yes, I am alive, yes, my treatment was successful.  When people say to me, "It's just temporary" or "It'll grow back" they don't get it.  I don't need others to know my business and the hairloss is a dead giveaway.  I believe that with all if the $that gets thrown at cancer research, they could come up with something that allows you to keep your hair, or find other drugs that don't cause alopecia.  If they are going to use 1950's antiquated "hand grenade" drugs, they can come up with a medication or treatment that would allow me to keep my dignity. I hate it when people dismiss my feelings of loss of control and dignity by "informing" me that it's tempirary, or only hair.  I tell my family to address the emotion and not try to educate me.  I am not ignorant, just distressed. My hair is coming back in.  I am 6 weeks since my last RCHOP.  Its gray and fuzzy.  I look forward to the day when I don't feel the need to wear caps.  Hate my wigs, won't wear them unless I must.  I get compliments on my funky styled caps that I got on Etsy and Amazon.  I find little joy in the compliments but it is my reality at this moment.