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Non Hodgkins Diffused large B cell lymphoma

dreamangelz101
Posts: 5
Joined: Dec 2010

Hello, I am new to these boards and have been inspired by the stories of strong people on this forum. God bless you all. My mother was diagnosed yesterday with Non Hodgkins diffused large b cell lymphoma. Has anyone had any experience with this? What should we expect? What does chemo therapy entail? I am relieved in a sense that her cancer was not a solid organ tumor but am still on edge that she is diagnosed with this illness. Can anyone give me any information on their own experiences or any words of hope? Thank you and God bless you all.

Love,

Sarah

dreamangelz101
Posts: 5
Joined: Dec 2010

Anyone? Please

thejollyfam
Posts: 5
Joined: Dec 2010

My dad was diagnosed with diffused large B cell lymphoma in oct of this year. He is set for 6 chemo treatments with radiation to follow. Hes had 3 out of 6 treatments so far, the 3rd being on the 23rd of this month. Hes doing R-CHOP as his chemo. So far, this 3rd treatment seems to have hit him the hardest. But as Tom said, the bodys reaction to chemo is a very unique one, because each body handles the chemo differently. The most important thing to remember is to PREVENT side effects, as much as possible. Chemo pre-meds are wonderful in prevention of nausea but they don't last for more than 24 hours. If your mother feels any sign or inkling of nausea coming on, take some medicine for it. If one of the side effects of her chemo is constipation, begin a bowel protocol asap! Dont let the side effects get so out of control, that they can't be dealt with. Another side effect that weve dealt with is taste changes (and this varies with patients as well), we tailor what we eat, to what he wants to eat. Whatever he craves, we fix! My dad also recieves neulasta as an immune system booster the day after chemo. It stimulates production of white blood cells & bone marrow so he can recieve the next chemo. The side effect that he experiences the most from it is bone pain. A few days after the shot is when this occurs, so the night before our "predicted" side effect day, he takes a vicodin before bed, which works pretty well.

I can only speak for my dad and his exxperience but I hope this helps. Make sure someone goes with her to her appointments, 2 sets of ears are better than one! Best of luck to your mother. If you need anything, let me know!

Whitney

Nay27
Posts: 3
Joined: Jan 2011

Hi,
My diagnosis is the same as your mom's. I've had two rounds of chemo so far. I echo everyone's statements that your love and support is very important. As far as the taste thing, bravo to those who were fixing whatever their dad felt like eating. This is actually my 4th time through chemo (all breast cancer before), and that is very important. Also keep her blood sugar up! I even keep peppermint candies in my purse and pocket so the second I feel anything (either hunger or the beginning of nausea) I pop one in my mouth. It helps SO much in keeping the heavy stuff at bay. Also, rinse with Biotene mouthwash 2 or 3 times a day, or after meals. It really helps keep the mouth sores at bay too.
Blessing on you, and your mom. Chemo sucks, no doubt, but life at the other end is worth it.
A day at a time.

tcvine's picture
tcvine
Posts: 174
Joined: Aug 2010

Hello Sarah,

So sorry to hear about your Mom. This is not ever something that anyone wants to hear. But she (and you) are just starting out on this and it probably seems like the end of the world.

Actually, it is very possible that 6 months from now you will be looking back and realizing that you've made it all the way through. If you have been reading this board, you know that many folks here have gone all the way through chemo and come out in remission. It is very possible - even likely - with the various treatments that are available now.

As it happens, I was diagnosed in July with diffuse, large, B-Cell lymphoma, aggressive, stage 4 (DLBCL-4-7/10). That means that my cancer was very far along, even though I had no overt symptoms. My doc put me on the R-CHOP chemo program. R-CHOP is one of several different chemo routines. Mine was set up for a chemo infusion followed by 3 weeks recovery period and then another chemo infusion. That lasted for 6 cycles. My last infusion was the day before Thanksgiving. Sometimes the docs will do more cycles.

Your Mom's reaction to chemo will be unique to her. Everyone reacts somewhat differently, so you can't take any one story and assume it will be the same for her. But the chemo is generally much better now than it used to be.

Please keep us posted on her progress - and tell her about this site, she might enjoy it

Best of Luck and Merry Christmas
Tom (DLBCL-4-7/10)

gypsy22
Posts: 17
Joined: Jun 2010

Tom I beleive you and my mom were diagnossed about the same time frame in April of this year.

My mom went through 8 rounds of R-CHOP. She had her good and bad weeks. Her worst was once she was off the prednisone she would have problems with her bowels and then become very weak. She actually had fallen twice, each time no major issues.

Her first scan was clean in November.

I have her spending the winter with me to keep an eye on her. She came down with the stomach flu going around and spent the day in the ER today. I worry about her everyday because other than my love and support I cannot do much else.

Nay27
Posts: 3
Joined: Jan 2011

Yeah, it was an adjustment to think I was doing better, then experience a drop after the 5 days of prednisone. I'm learning! The weakness was more than I anticipated, since I almost feel normal while I'm sitting down. But, I think I can anticipate it now and not get myself into any bad situations overdoing it.

tcvine's picture
tcvine
Posts: 174
Joined: Aug 2010

I'm very glad to hear that her last scan was clean. That means she's in remission. Is she on any maintenance therapy?

To finish my story, on Dec. 22 I got the results of my testing and I am also in remission. No maintenance therapy and only follow up testing every 3 months.

VERY good news for Christmas for us.

Now its on to the recovery phase, which will be a lot of work for many months. But I want to get back to my normal level of fitness.

Happy New Year.

Tom (DLBCL-4-7/10-Remission)

miss maggie
Posts: 929
Joined: Mar 2010

Dear Tom,

Somehow I missed your post from Jan 2, sorry. What wonderful news you are in remission. Great way to start the New Year 2011. Hopefully the recover time will be short. I too am in remission, with no maintance treatment.

Happy New Year to you also.

Maggie DX 09/09 Sub type "Extranodal marginal zone B cell, stage 1 NHL. Remission 01/11
There is no maintance treatment with this sub type.

DadysGirl
Posts: 346
Joined: Aug 2011

Hi Tom, my dad also got diagnosed with stage 4, where were your lymph nodes and the organs involved with b cell non hodgkins?
Thank you.
Best Regards.

DadysGirl
Posts: 346
Joined: Aug 2011

Hi, I was wondering how you were doing?
Best Regards.

DadysGirl
Posts: 346
Joined: Aug 2011

Hi Tom, I was wondering how you were doing and also how was yours a stage 4? Where had it spread to? My dad is in same situation at the moment and he may be starting chemo tomorrow... it's been really tough few weeks for us.
Best Regards.

magnaroman's picture
magnaroman
Posts: 3
Joined: Sep 2010

Hey there,

I can say this. I was diagnosed with this exac t cancer. I made through it and it was in stage II, It really honestly depends on how well she is responding to the meds given. I was lucky I had hardly any side effects to the chemo.

But the shocker I had was the hair falling out, I was not prepared for that. The other big thing was the prednisone. The emotional rollercoaster I was on while taking it was really hard. the best thing you can do is be there for her and support her.

I had to have transfusions twice and had two bouts with MRSA infection. My port became twisted and they had to put in a picc line. It was a harring experience.

I had almost no emotional support while going through my stuff and let me tell you, its something that is just vital to making it through okay. But the important thing is perspective that the paitent has, Go in with a basic belief that life is possible and probable. Hope is one of the best things you can have as a paitent or as a loved one of a paitent.

As for an inspirational anncedote, The day before I was diagnosed this is what happened to me..

I went out to the porch for a smoke, Cause back then I occasionally smoked cigars. As I was doing my thing it was raining na dI heard a feint mew coming from my butterfly bush. in it was a three week old kitten. I remember bending over to pick her up, and thets when I felt a odd lump in my groin. Well I brought her inside,no tag, no collar nothing. Then I began to panic about the lump more and more and more. Wife and I were like okay in the morning lets go to the ER.

So I went to the ER they had diagnosed me first with some infection of my man parts, I took a course of antibiotics didnt help an dpain kept getting worse and worse, ended up going through surgery, when I came to, the hospitals head of oncology walked over to me and said , "You are a sick person, it appears to be a cancer we will know more after we study what we took out of you." I fell back asleep shortly after that and woke up, I realised at that point and time that the kitten we found we were going to keep. I named her Hope.

Well to make a long story just a little more longer, I was diagnosed with NHL Large difused B cell lymphoma. Its agressive but its exceptionally treatable, even in its later stages its treatable. Even if her hope isn't in the form of a cat that she found, its an important thing you can have throughout your treatment.

KC13167's picture
KC13167
Posts: 215
Joined: Jun 2010

Sweet story. TY

JoanieP's picture
JoanieP
Posts: 573
Joined: Mar 2010

Hi Sarah,
I know it was hard to hear that your mother has NHL. I was diagnosed in 2009 Jan with Follicular Large b cell and I had CHOP and was in remission within three months. I went back to teaching in Sept 2009 and I feel great. I feel very blessed, have a strong faith and the lessons I learned from cancer are wonderful. I know I am not in control, trust God for every decision in life and enjoy every day . Your mother's attitude and God's strength will get her through. I'm 63 . God bless you and your family in this difficult time. She will get through this!!!

JacquieK's picture
JacquieK
Posts: 14
Joined: Jul 2011

Hi Sarah,

I have Diffuse Large B Cell Lymphoma. I was diagnosed last July when they removed the tumor the size of a man's fist from my heart. My had also wrapped around things in my neck (vocal chords, etc.). I went through chemo which can be rough towards the end. She'll probably be put on RCHop. Standard for Lymphoma. She may also need radiation (I did). I was lucky in the fact that I am still you and strong (43). The best thing you can do for your mom is be there for her unconditionally. My husband struggled with me saying no to each new step/treatment. I didn't mean I would not get them, but when you have cancer you have absolutely no control of what is happening to you. My way of dealing with this was to say no way, I'm not going through all of this. My case was rare. Usually when you have DLBCL you don't have to have surgery first. It's great that your researching what is coming your way. It helps you to feel stronger.

God bless you and keep your mom safe,

Jacquie

Dapsterd's picture
Dapsterd
Posts: 291
Joined: Jun 2010

Hello..my dad has this same diagnosis of NHL. He has been on/off chemo and rads for 6 yrs, now it is taking over and he is too weak for any more chemo and too old for stem cell business, and is on pain meds. We ordered him a hospital type bed for the home and a nurse as well.
Doc gave him 3-6 months. He will be 80 this fall.
His bone marrow is simply not producing the correct blood ingredients anymore.
If he was younger, they would hit him with chemo again.

He says he is ready, he is contented and at peace with the whole deal (sort of !!)

Thanx
Dave
Stage IIIB Lung Cancer

xlconsult
Posts: 18
Joined: Jun 2011

Dave,
Sorry to hear about your dad. Definitely chemo is not advicable at this stage. You may consider using a herb called Ashwagandha (Withania Somnifera) to improve immune system and good sleep. I had a remarkable recovery from 1-1/2 yrs of chronic inflammation inside throat/intestine etc. probably caused by COP-R chemo followed by Rituximab maintenance therapy for my NHL. I am 61 years "young" and undergone chemo thrice in the past from 2002. My recovery this time after 1-1/2 years of suffering was within a month using this herb that I accidentally found through google search. It is a natural herb and hence is not proprietory - many companies market this as a food supplement. I found that this herb helps in two ways:

1. Increasing Lymphocytes in the blood (increased from approx. 700 for past several months to around 2800 within a month and is maintained at this level for past 4 months). Also my high ESR levels (indicating inflammation / infection) went down to normal within 3 months.

2. Relieves a lot of stress and very smooth sleep unlike the allopathic drugs that I had before that gives too drowsy feeling. I stopped the mild anti-depressant drug that I was using before once I started this herb. As this herb is used in Ayurveda (Indian medical system as old as 4000 years), it is proven to have no side effects.

You may do a Google search to find its availability in your nearest Food supplement shops.

Good luck.

Hari

xlconsult
Posts: 18
Joined: Jun 2011
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