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Brand new diagnosis

Birder's picture
Birder
Posts: 29
Joined: Oct 2015

i am 65, male, and was diagnosed with diffused large B cell lymphoma. My appointment with the oncologist for a bone marrow biopsy is Wed the 7th. I want to thank everyone for being here and when I get more information I'll be back.  Thank you all.

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3328
Joined: May 2012

Yes, please do let us know what you learn.  Whatever it is, several people here will have experienced it.

givingrace's picture
givingrace
Posts: 161
Joined: Nov 2012

Welcome Birder,

So sorry for your dignosis,but glad you have found this forum.

People here are very helpful and I don't know what I would do without this group.

Keep us posted.

~GG~

incrediblyblessed
Posts: 5
Joined: Sep 2015

I'm sorry to hear about your diagnosis but you will find this forum rich with information, support and help. 

Birder's picture
Birder
Posts: 29
Joined: Oct 2015

I had a full torso C-T scan and a bone marrow biopsy on Wednesday Oct 7th. I know the bone marrow procedure goes differently for each individual but in my case it was virtually painless. Some odd, faint nerve sensations when withdrawing marrow but no pain whatsoever. I report that so that others approaching the procedure can know that they too may have a very easy time of it. In the two days since I've noticed a bit of stiffness in that area, but again, nothing approaching pain. 

I'll be speaking with the Doc next week to get the results of my biopsy and C-T, the stage of lymphoma and extent of chemo and perhaps radiation. He said we would go for R-CHOP. One component is apparently dangerous for those in my age range (65) with a certain heart condition, so today I had an echocardiogram to make sure I am all clear to use that one. I go in Wednesday the 14th to have a port put in my chest. 

When I have info as to a stage and treatment I'll be back on and let you know. 

As a recovering alcoholic of 23 years I really understand the value and goodness of people wanting to provide support for each other. I thank you all very much for being here.

Sten's picture
Sten
Posts: 162
Joined: Apr 2013

Hi Birder,

Lymphoma can be cured.

I was diagnosed with PCNSL (primary central nervous system lymphoma), a large B cell tumour in my cerebellum, at the age of 68 in the year of 2012. First I got cortisone, then three rounds of mixed chemo and antibodies, then stem cell collection, then high dose chemo followed by autologous stem cell transplant. The high dose chemo was tough - my stomach took three months to get in order again, and I was weak for months. But I recovered, and I am now NED (no evidence of disease) since late 2012, and feeling well.

Good luck to you!

Sten

 

lindary's picture
lindary
Posts: 663
Joined: Mar 2015

Sten,

Monday I had the pulminary & cardio pre-stem cell tests. They all went well. My blood counts are also on target. I will be getting autologous SCT.  Today I met with the surgeon that is going to put in the catheter for the collection of the t-cells and later transplant. Next week I start the shots  to encourage the growth of the t-cells. When I go into the hospital I will get 6 days of chemo followed by the stem cell transplant. The whole time I have been reading up on SCT and talking with the Stem Cell team at teh hopsital I know the purpose of the high dose chemo is to kill off the ne marrow. Today in my meeting with my SCT nurse it suddely dawned on my that when the bone marrow is killed off so is all of the immunities I have built up over my life-time. What the nurse said that made me realize this is that after SCT is done I will need to talk to the dr to find out when I can start getting shots to replace those immunities, or at least some of them. Did you have to get the immunizations afterwards? About how long after the transplant did you get them and which ones?

lindary's picture
lindary
Posts: 663
Joined: Mar 2015

Birder,

I am 65 and was diganosed with follicular non-hodgkins lymphoma Dec 2014. R-chop started in Jan, finished in May. My bone biopsy went like yours, no pain and just some small aches a few days later. I will getting a second bone marrow done about 2 weeks and i am hoping for the same. I have heard some people say they found the procedure very painful and it took weeks to get over it. I guess we are the lucky ones.

The thing I found with R-chop was the prednisone part. I had to take 100 mg for 5 days starting on the day of chemo. The highs from this steroid were kind of cool since it gave me a lot of energy. The crash about 2 days after stopping was the pits. I just wanted to sleep. I did find it helped to take a nap the 1st and 2nd day after I stopped taking the Predinsone. I think the drug that you are referring to affecting the heart is the Rituxan. I know that any day I get Rituxan I do not take my blood pressure medicine. My blood pressure is not extreme but I am told that drug will lower the blood pressure. 

Glad you are getting a port. I had debated about it but my second visit with my oncologist she made it clear that she felt it was not an option, I had to get it. I didn't argue on that one and I am glad I got it. For me R-Chop didn't get my cancer in remission so I just finished 3 rounds of Rice and will be having Stem Cell Transplant. With all of the times blood has been drawn, chemo given, etc., my poor veins would have caved in. 

Good luck on the test results. 

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3328
Joined: May 2012

Birder,

I'm glad your biopsy was pain-free.   The drug in CHOP most related to heart problems is Adriamycin, nicknamed "The Red Devil" (in part because it turns urine red or pink for a day or so after each infusion).   This link will allow you to read about it.  It's heart-damaging tendency is rare, only around 1% to 2% of patients.

http://chemocare.com/chemotherapy/drug-info/adriamycin.aspx

Congrats on your decades of recovery !   My dad was one of five brothers, all very smart, all very successful; two were millionaires.  All five died drunk.  All were in and out of treatment centers for decades.  One in fact died in a high-dollar Betty Ford type facility in Las Vegas.  He and my dad died of the usual:  liver failure.  One froze to death on a park bench in Boston, after losing a fortune. One other died of D.T's  while tied to an E.R. stretcher. 

Alcoholism is often much worse than lymphoma, given that lymphoma is usually either curable or treatable for long, long periods. May you get through this challange quickly and without issues.  It is all One Day at a Time.

max

lindary's picture
lindary
Posts: 663
Joined: Mar 2015

Max,

Very interesting family history. I take it your family's attitude toward alcohol is a lot different than most other families.

In my husband's family they have had their own dealing with alcohol. Oldest brother died of throat cancer (alcoholic, chain smoker). Next 2 brothers were heavy drinkers. They blamed their brother's cancer soley on the smoking. Any of them that smoked stopped, except for one. He died from lung cancer in 2005. One of next 2 oldest is my husband and the othe one is also married. Both denied for a long time that alcohol had anything to do with their oldest brother's death. Once I found out that throat cancer can also be caused by heavy drinking I got on my husband about his drinking and my sister-in-law got on her husband. (Not to mention we also had kids to worry about.)  It took us years but both guys did cut back on drinking to the point it is mainly a social activity and still limited. So that leaves 3 other brothers, all of which hardly drink at all, for reasons of their own. 

Lymphoma we don't ask for it. It happens and we have no control over it.  

Alcoholism is a addiction, which in some cases can start at a very young age. It is still debateable if the person has control or not. Some do, some dont' seem to and some don't want to. Definitely worse than lymphoma.

 

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3328
Joined: May 2012

lindary,

I don't want to gum-up Birder's thread with an alcoholism discussion, but will say that throat and escophagal cancers follow alcoholism closely and frequently.  An uncle through marriage was a severe drunk, and died of throat cancer in the 1970's. Scans and treatment were primative then, and he was cut from his jaw to his pelvis in a 16 hour surgery that basically did no good. Our parish minister was a closet alcoholic, and died of throat cancer a few years ago, so it it a common thing.  Most alcoholics die either of (1) accidents, or (2) liver failure.  Many seem to avoid heart-related deaths, since alcohol is a blood thinner.

I believe alcoholism to be mostly genetic, but also believe that people have free will, and can take charge of their lives.  My brother is sadly an alcoholic, but functional.  I am not one myself, as best I can tell.  I drink beer, but in moderation, and nothing else.  No cravings, no issues, so at 59, I suppose I am not an alcoholic.   We all have our tribulations.  Cancer is terrible, but the world has many other terrible things to pass around.  If I write further on this it will be via private e-mails

max

Birder's picture
Birder
Posts: 29
Joined: Oct 2015

"As a recovering alcoholic of 23 years I really understand the value and goodness of people wanting to provide support for each other. I thank you all very much for being here."

The quote above was my only reason for mentioning alcoholism.  We all have our demons.  23 years ago I chose life over death.  That demon is gone.  Nobody will gum that up.

Take care

Birder's picture
Birder
Posts: 29
Joined: Oct 2015

Diffused Large B Cell Lymphoma-I just spoke with my oncologist. Bone Marrow Biopsy revealed no marrow involvement. CT Scan revealed a few nodes involved in my chest, none involved below the diaphram. He did say nodes in abdomen are more visible than he's used to, so he is going to set up chemo as if they were involved.

i forgot to get a further type description of the Large B Cell, but I will next week.

The Doctor stages me at a 2A, 6 rounds of R-CHOP, 21 day intervals, to be reevaluated after 3 rounds. 

I have my port installed and I'm set to go.  I hope the first round can be as early as late next week.

 

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3328
Joined: May 2012

Birder,

It is a good feeling to know for certain what you are dealing with, and to have a plan in place.  As I read your statement, I was thinking "Stage 2," and then saw what the doctor had determined:  "2A".  The "A" in lymphoma staging simply means "no 'B' symptoms."  This is a very good thing, since 'B' symptoms are associated with more aggressive disease and slightly poorer prognosis. (Most cancers, especially organ cancers, do not have this 'A' or 'B' designation option.)

The scan after 3 infusions is standard for almost everyone. He will evaluate how well the medicine is beating back the disease, and tweak the plan if necessary.  Usually, at this scan following the third infusion, the doctor does NOT expect all of the disease to be gone, but instead to see substanntial shrinkage of the tumors, which the remaining med will totally eliminate.

Stage 2 is definitionally "early stage," but he is thinking you were on the cusp of a very minor Stage 3, it appears.  Either way, it sounds to me like you very likely will walk away after treatment ends with no cancer and little liklihood of every seeing it again. 

My layman's opinion,

max

Explanation of "B" vs. "A":   https://en.wikipedia.org/wiki/B_symptoms

.

RayEB's picture
RayEB
Posts: 1
Joined: Sep 2015

I also am 65 years old with large B-cell Lymphoma.  Diagnosed 9-20-15.  Pet Scan and Bone Marrow test 10-5-15.  Results: Stage 3a - Cancer in neck and upper chest Lymph Nodes and one fairly large spot in spleen.  Bone Marrow CLEAR (yippie).

Chemo port installed 10-12-15 and first R-chop (of 6) 10-14-15.  Neulasta shot 10-15-15.

Well, there are all the nasty details.....

I also experiencied little pain in relation to the Bone Marrow test.  More simple pressure as he was screwing the needle with a T-shaped handle into my rear pelvic area.  Absolutely no pain or soreness afterwards.

Oncologist assures me that the R-chop will do the deal.  Says I should come out of the treatment with a minimum of 5 yr. remission.

I have taken all the instructed meds since my first R-chop (3 days ago) and thusfar have experience very little in the way of side affects of the chemo.  I trust that the meds I am taking are simply keeping this difficulty at bay.  A bit fearful next week when my Pregnizone (sp) runs out.

Just trucking along and being pampered by my wonderful wife!!

Birder's picture
Birder
Posts: 29
Joined: Oct 2015

Ray, It seems we are very much in the same boat. You are slightly ahead of me in your chemo so let's stay in touch. I wish you all the best!

pj2015
Posts: 7
Joined: Oct 2015

Hello RayEB & group,

 Always been healthy 68 years old I recently learned I'm one out of four women to have MCL, while raising a four year old granddaughter.

Diagnosed with B-cell Mantel Cell Lymphoma early in October. Power port installed 10/20/15. I feel this growing in me every day, but my chemo will not start until November 2, 2015.

Birder's picture
Birder
Posts: 29
Joined: Oct 2015

thank you Max, especially for your "layman's opinion". Scary times, these. Words of positive outcomes are invaluable. If all goes well for me I'll carry on the tradition and pass them on!

Sal0101's picture
Sal0101
Posts: 125
Joined: Sep 2015

i am a 57 year old female diagnosed with DLBCL on September 11, 2015.  Stage 4 because it's in my breast, liver and lymph nodes in between.  Brain, bone and spinal fluid are clear at this point! I've had 2 rounds of R-chop with 4 to go.  They are throwing in methotrexate after the 2nd, 4th, and 6th treatment which will require a few days in the hospital.  Supposedly prophylactic to keep the brain/ CNS clear.

So far, besides being tired, I haven't had many other symptoms.  Prednisone crash after the first treatment, but not this time.  Maybe I know what to expect??  Neupogen shots several days in a row which made my bones hurt the first time around, but not so much this time around.  The nausea meds must be working pretty darn good!

Before this I walked 8-10 miles a week and considered myself healthy.  I still get out and walk, just not so far. I haven't taken any medications in years and have used 1 sick day in the 25 years I have worked for the same employer,  so this diagnosis was quite the surprise and hard to deal with.  I still feel like I'm in someone else's body.  

I ready and willing to fight this beast along with the rest of you!

Birder's picture
Birder
Posts: 29
Joined: Oct 2015

We are a team! Thanks

Simon24
Posts: 43
Joined: Oct 2015

My husband is also getting Intrathecal chemo (Methotrexate) in between R-CHOP.  He's had two of four and he gets spinal tap headaches afterwards.  He is getting it as a prophylactic,too.  His Diffuse Large B Cell started in the testicles and he also has a mass near the abdominal aorta.  He will have a PET scan next week to see  if the R-CHOP has been effective.  After his 4th of 6 rounds of R-CHOP his WBC count is very low and he is really feeling the fatigue after the Prednisone wears off. The first three were much easier for him.  How are you doing with the Methotrexate?  He has to lie flat for about 24 hours after the treatment and he gets headaches anyway.  He tries to drink a lot of water, but I guess he is just prone to spinal tap headaches.  The funny thing is he almost never had headaches before.  I hope you are doing well with both the Methotrexate and the R-CHOP. 

We have walking in common.  We used to walk several miles a day and we still take a brief walk each day, too.  It's good to get out in the sun and enjoy the day.  Have a nice weekend.  Simone

 

Sal0101's picture
Sal0101
Posts: 125
Joined: Sep 2015

My first methotrexate was delayed.  My WBC was too low.  The plan now is to have my first one Monday.  Thanks for the info on the spinal headaches.  I had a nasty one after my spinal tap, and wasn't expecting it as a side effect of the methotrexate. I'm certainly not looking forward to that.  How long do they last?

 

 

lindary's picture
lindary
Posts: 663
Joined: Mar 2015

When I got R-CHOP and RICE is usually got a shot of Neulasta a day or two after the chemo to help the WBC increase. It tkes about a week to kick in but it really does help to get those Whte Cell counts grow.

During the R-CHOP is kept trying to figure out how to deal with the Prednisone. I was taking 100 mg for 5 days.Usually by the third day I had so much energy I felt like I cold clean & paint the whole house. But I didn't. Then there was the sudden stop. My oncologist & onc nurse did not warn me, or I missed what they said so the first time was horrible. The first day is topped wasn't bad. The second day I felt like so tired. The third day I fetl like a wrung out rag. I had an appt with my dr for a blood check and that is when she said it was a normal "crash" from the Prednisone. 

After the second chemo I tried resting that first day without the Prednisone and getting as much sleep at night as I could. It seemed to make that third day not so bad. 

 

Simon24
Posts: 43
Joined: Oct 2015

The headaches after the Methotrexate are no where near as severe in my husband as the initial 8 day spinal tap headache during his pre-chemo testing.  He rests after the treatment at the cancer center for about three or four hours and then again when he gets home. If he feels a headache coming on he tries to lie down for about 15 minutes and that seems to help.  If he absolutely has to go somewhere where he will be sitting or standing for long periods of time and gets a headache the doctor has prescribed oxycodone -acetaminophen 5-325 which takes away the headache.  It is strong and he doesn't drive when he takes one.  He actually hasn't needed to take more than a few the whole time.  The resting and drinking lots of water seems to help a lot.  Because they are only taking a little spinal fluid out for testing each time and are adding the Methotrexate I think that keeps the headaches from being severe.  The funny thing is if he still has a slight headache when he gets his R-CHOP a week after the Methotrexate treatment the headache goes away completely.  His WBC count has been pretty low after R-CHOP round 4 so we hoping he can go ahead with the Methotrexate on Thursday as planned.  I will be thinking of you on Monday and hope that everything goes very smoothly.  Just try to lie flat for as long as possible after the treatment and also drink a lot of water.    Simone

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