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follicular transformed as diffuse large B cell HELP!

nhldaughter
Posts: 69
Joined: Nov 2010

Hi all,

Writing from California.  Hi to those I've talked to before.  Some usernames I recognize and get happy to see.

I return here in a bad state after two years.  my loving mother who means the world to her three daughters was diagnosed with follicular lymphoma grade 3A (i think) in 10/2010.  she underwent  4 cycles of B-R  and was clean.  then she did 4 or 6 (can't think as i'm a mess) cycles of rituxen every 3 months.  we had to stop the last 2 because she had a herniated disc and did emergency spine surgery which had horrible recovery.  now we just got a confirmed core biopsy result that it is back as diffuse large B cell aggressive lymhoma.  she is almost 70 and weak from the spine surgery and recent shingles attack.  the  UCLA oncologist just told us today she needs to start EPOCH R immediately and be hospitalized.  we were almost thinking going the palliative route as within the last 5 days she has had constant fever and lumps in her underam are getting bigger and more.  i feel like it was a sudden downfall within the past week, though symptoms had started 1.5 months ago, until this was caught two weeks ago.  i partly blame her oncologist hence we've switched to UCLA. PET scan had also shown activity in her umblical area and we feel lumps there.  the UCLA doctor said, no we do treatment in hopes to clear it.  should we????  from my reading of 3 years ago when she was diagnosed i recall if there is relapse and it comes back as diffuse large cell prognosis is not good.  my mother has suffered a lot since 2010, should we put her through more?  her english is not good and she can't make use of this great community here.  she too is not sure.  please help. should we do treatment as the UCLA doctor said?  tomorrow we take her to City of Hope too to see what they recommend.  I am in panic of losing days here and there and it growing uncontrollably all over.  she feels weaker and not herself as each day goes by.  fever only controlled at 100 degrees by vicodin and tylonel.  please advise! anyone with a similar situation.  we don't want to be hopeless, but it's SO hard not to be when you see her and read statistics!  Thank you!

illead's picture
illead
Posts: 544
Joined: Aug 2012

I have no answers for you.  I suggest you listen to the oncologists. especially ones you really trust.  Someone with her lymphoma will hopefully answer, but really, we are not doctors and do not know the situation.  Try to stay calm and know that your mother's doctors have much information and are doing their best and lynphoma is usually very manageable.  Try to relax and be there for your mom.  We are here for comfort and support, please let us know how things are going.  Thinking about you and your family, I know this is very scary for you.  All of us have been there so we understand, I am sure your mother is in good hands, Becky 

Shoopy
Posts: 210
Joined: Jul 2013

I am very sorry your mother is going through this.  I have DLBLC too.  I am 48.  I didn't react to the 'standard treatment' of R-CHOP and now am in 'salvage treatment' of R-DHAC with stem cell transplant planned in the next 6-8 weeks.  I've read all the literature about prognosises.  At first it was very overwhelming...then I started to ask myself, "Well, why can't I be part of that percentage?  There's no reason!"

Honestly, I can't answer your questions regarding treatments.  I think that's something that needs to come from God, your mom, and you.

I can offer you a question I asked all my doctors when discussing treatment, "If I were your father or brother...is this the treatment you'd give them?"

In the meantime, I will keep you and your mother in my prayers.

Karl

onlytoday's picture
onlytoday
Posts: 592
Joined: Jun 2010

Hi,

 

I agree with Karl and Becky.  I also do agree with the idea of you having a second opinion for your Mom.  Hopefully you and your siblings can discuss options with your Mom and then feel peace with your decision.  There are many treatments out there with more coming out on a continual basis- so I think there are many different ways to go.

Can't say which one is best for your Mom but I trust that with a lot of prayer and the love of family you all will find your way through this.  I am sorry this is happening and I do understand your fear. 

Praying for Peace for all of you,

Donna

 

 

 

nhldaughter
Posts: 69
Joined: Nov 2010

Thank you all. She decided she will do the treatment. It's supposed to start today. We're petrified and trying to be normal.  I pray all will be okay and she doesn't suffer. 

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 1140
Joined: May 2012

Daughter,

You mentioned that the treatment would be inpatient.  That is no doubt a very good thing, and may make it a bit easier for you family members, since she will probably be weak and difficult to move.

Blessings for all of you and her decision to take the treatment,

max

illead's picture
illead
Posts: 544
Joined: Aug 2012

Our thoughts are certainly with you.  This is difficult for all of you involved.  Remember one thing, our older bodies are made of better stuff than the newer models Wink  I hope you will be happily surprised.  Try to keep positive thoughts.  We will keep you in ours.  Becky

allmost60's picture
allmost60
Posts: 3172
Joined: Jul 2010

Hi Daughter,

 I do remember when your mom was first diagnosed and you came here for help. I'm so sorry she is going through this again. I will be keeping good thoughts and prayers for your mom and family. Let us know how her treatment goes.

Best wishes...Sue

(FNHL-2-3A-6/10-age 62)

Marydutton
Posts: 14
Joined: Feb 2013

My ex husband was in pretty bad shape when he started his repoch treatment in December.  However; he responded very well almost immediately.  He could hardly walk or put a jacket/shirt on by himself.   Maybe she can get some immediate relief and then you can have more time to make better decisions :)

nhldaughter
Posts: 69
Joined: Nov 2010

Thank you all. She is into day 1. sue, I recall your sweet and kind words from 3 years ago too. You are all wonderful here. I too hope I'll be surprised and this palease in a manageable manner. Praying for all!

ellen495's picture
ellen495
Posts: 2
Joined: Aug 2013

I also had transformed FNHL treated with auto SCT. I'm at day 180 and doing great. The statistics are actually reasonably good for a cure (of the aggressive cancer )

How's she doing?

Ellen

nhldaughter
Posts: 69
Joined: Nov 2010

Oh ellen I do hope the  stats you are talking about applies here.  Did you have slow growing follicular and it came back as diffuse large cell??? Or were you just initially diagnosed with the aggressive kind? What is auto SCT? I have not heard of that at all. I'm glad to hear you are doing great, Ellen! Meet brought mom home and she is in bed Off and on. She didn't like the blood transfusion I think because since then she feels like her throat is kind of congested and her tongue feels heavy. The doc checked and gave her a Benadryl at discharge. She said all else looks normal. That feeling khala stayed with her though, stiff neck and swollen throat feeling. 

please give me more info about your diagnosis and also auto SCT. Thank you!!

nhldaughter
Posts: 69
Joined: Nov 2010

Hi Ellen, I did a quick search on auto SCT and I guess it's a bone marrow transplant? They said she is old for a transplant. She is 70...

i also read things about T cell. Hers is B cell, large diffuse. 

Gina H
Posts: 7
Joined: Nov 2013

I am a lot younger than your mother, I was 50 when I was diagnosed with Diffuse B Cell Non Hogkins Lymphoma. I had the 6 rounds of R-Chop and was in remission for almost 4 years. Recently found out that it has come back as Follicular NHL. The treatments are definately hard. It really depends on the person as to how they react to it. The first couple of treatments did not affect me drastically. The toughest part was the Prednisone (steroid) for 5 days, I had to take 100mg per day. It really keeps you reved up. Be prepared for some sleepless nights. It really makes you restless. When she will start feeling the worst is a few days maybe a week after when her blood cells drop. She will have to be exremely careful when her white cells drop. Even a cold can develope into something a lot more serious. My doctor would have me come in the next day for a Neulasta shot which helps build the red blood cells quicker. This can cause some bone pain, usually in the larger bones. My doctor had me take Zyrtec to help prevent the bone pain and it worked wonderfully. Make sure they give her a good nausia medication also. It can also cause mouth sores but the Lord blessed me on that one. I hope this helps a little and if you have any questions I will be happy to help you if I can

Have faith

Gina

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