Recurrent Non-hodgkins Lymphoma

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Recurrent Non-hodgkins Lymphoma

by Kevin_t on Sat Oct 23, 2004 12:00 AM

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I was diagnosed with Diffuse Large Cell B Non-Hodgkin's Lymphoma in March of this year. I went thru 6 cycles of CHOP therapy and had a clean PET scan at the end of July. However, the end of September I became very sick and was admitted to the hospital and diagnosed with Recurrent Non-Hodgkin's Lymphoma. I was previously a stage 3 and am now a stage 4. I just started my first of 4 cycles of a chemo drug called Gemcitabine(GEMZAR), however no where in my research can I find where this drug is used for NHL. Was wondering if anyone has had this chemo agent in treating NHL and any info on the use of it in treating NHL. Thanks, Kevin T.

Recurrent NHL

by Shirleyd on Tue Oct 26, 2004 12:00 AM

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Kevin, Has anyone mentioned Rituxin in connection with your treatments? I have heard and read about really good results from this. I am not an oncologist and do not know about the drug you mentioned but just thought I would mention this. Shirley

Recurrent Nhl

by Kai_J on Fri Oct 29, 2004 12:00 AM

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Kevin, I know what you are going thru. I'm a two time survivor of NHL. I have a book that may help you. It's called "The Complete Cancer Survival Guide" by Peter Teeley. I have found it very helpful. I would also suggest the Lymphoma.org website. They can answer just about any question you may have. They also have an 800 number for you to call. I hope this helps. Kai

Rituxin

by Kevin_t on Fri Oct 29, 2004 12:00 AM

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Shirley, Thanks for the info. My doctor just the other day did mention Rituxin in combination with Gemzar. However, when I received Rituxan with my previous CHOP therapy my platelets dropped to critical levels. I have received one dose of Gemzar alone and my platelets dropped to critical levels again, so his concern is that with Gemzar and Rituxan i would be in danger. On the other hand he tells me Gemzar alone is not really effective, so now my wish is to take a chance and get the Gemzar and Rituxan combinaton and just monitor my platelets very closely. I feel i have nothing to lose. I greatly appreciate your response and informaton. Kevin

Non-hodgkins Lymphoma Info

by Kevin_t on Fri Oct 29, 2004 12:00 AM

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Kai, Thanks for the information. I pulled up the website you mentioned and obtained some very helpful information. I also orded a copy of the book you suggested. Thank you once again. Kevin

Rituxin

by William_F_3 on Mon Nov 22, 2004 12:00 AM

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Kevin, I had stage 5 NHL small b cell. They used Rituxin with CHOP. I have been in remmison almost 3 years. I will be praying for you. I know we all are scared, is it back. May God bless and heal you. Bill F.

RE: Recurrent Non-hodgkins Lymphoma

by GrammaKitty on Thu Apr 10, 2008 12:00 AM

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They started me on Gemzar and Cysplastine and Rituxan last July.  They wanted to do it for 4 months.  They had to stop because the Gemzar was causing my red blood cells and platelets to go very low.  I had to have 2 units of blood twice.  This was my third treatment since May 2004.  They gave me radiation to the area that still had cancer.  Then they put me on Rituxan for 4 wks. ( 1 day each week ) and then I was to have 8 wks off then 4 more of Rituxan, etc.  Rituxan is an antibody and only goes after cancer cells.  Lymphoma has CD20 and the Rituxan goes after that.  It's a way to help the chemo.  Then they give it to you to keep the cancer away or keep it from progressing.  I took it following my first chemo and radiation.  It didn't do anything for me.  My Lymphoma (small B-cell follicular Non-Hodgkin) was indolent and I could have stayed that way as a chronic disease.  The lymph nodes can swell and then they can shrink but it really isn't a problem.  When I developed Hodgkin Lymphoma they had to treat me.  The first treatment put the Hodgkin Lymphoma into remission.  It has a high cure rate.  Problem is that the treatment also took away the NHL.  It came back in less than a year and had morphed into Grade 3 a more aggressive form.  The second treatment was Bexxar and it came back in 6 mos.  This last treatment didn't take all of it away.  The Rituxan doesn't work for me.  My Grade 3 is very resistant to treatment.  I don't qualify for anymore treatments because my immune system is worn out.  It's been months and the red blood cells and platelets have not come up.  I am very weak and very tired.  I try to do things but then I get exhausted and sleep for a day.  Rituxan and Bexxar have been wonder drugs for many NHL people.  I am in the small group that it didn't help.  I will get some scans in July to see how much the cancer has progressed.  I've never had any symptoms.  They found it accidently on a MRI for my back.  I was fine for 7 years until the HL came.  That set things in motion for me to come to this dreaded place.  I had hoped to be one of those people who lives for years with indolent.  I've heard from people that a relative lived 20 or 30 yrs.  My first treatment was ABVD-Adriamycin ( that can damage your heart), Bleomycin (that can damage your lungs) Vinblastine and Dicarbazine (SP).  The Bleomycin damaged my lungs so badly that if I hadn't gone to the ER for 2 more days, I would have died and they wouldn't have been be able to save me.  The month before the lung damage I got a staph infection in my port-a-cath.  I was so sick they didn't think I would live.  I knew that was what they were thinking and so was I. I had it put in 2 months before but it never healed.  The dopes had put it too low and my heavy breast pulled it down and open.  The port I have now is on the left side and a great deal higher.  Bexxar and Rituxan are antibody treatments and don't do harm like the chemo does.

 In December I was admitted to the hospital because I had a bad cough and my lips were blue.  I had to have 2 units of blood.  I went home the next day.  The day after that, I had to go back in because my right kidney bled for 4 days. Probably from the Gemzar.  Kidney damage is the first side effect in the common side effects  list.  I got to go home on Christmas Eve Day.  There wasn't a tree or any decorations or baking.  It was a non-Christmas.  I had a cystoscopy at the end of January.  Whatever it was, was gone.  They biopsied my kidney and my bladder and found nothing.  They think it could have been a blood clot. 

I am the very unusual case.  I don't want anyone to think these things are going to happen to you or a loved one.  My Oncologist is keeping really good notes on me because she may do a paper on me and have it published in one of the medical magazines.

I have been praying that God would make me a miracle and cure me.  He hasn't let me know yet, what road I am going down.  It could be the Dead End one.  I almost died 5 times and he could have taken me any one of those times.  He didn't.  I like to think it is because He has more work for me to do.  I have learned a lot and grown as a Christian.  I make a very good witness.  People can't believe how calm I am about it.  First I don't rely on the doctors because God is in charge of this.  Second, I know He will give me the strength and encouragement to accept and then He will give the peace and calm to the end.  He is the center of my life.  I see things so differently.  Things mean nothing to me.  Accomplishments don't mean anything to me.  Spreading the gospel to others so they will be saved is all I care about.  I hate to think of anyone being lost for eternity.  Nothing is more important than people.

Kitty

 

 

 

 

 

 

 

 

 

 

 

 

 

 

RE: Recurrent Non-hodgkins Lymphoma

by sbarlow3 on Sat Jan 29, 2011 10:57 PM

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Kevin,

I'm a non-hodgin's lumphoma survivor for 10 yrs. now.  I was treated with 6 cycles of CHOP in 2001 and the day before I received my CHOP I was given a drug called Rituxan. My doctor is Thomas Alberico with Virginia Oncology Assco.

So far I'm still in remission, hope this information is helpful.

Steve,

RE: Recurrent Non-hodgkins Lymphoma

by alaskarose on Fri Aug 05, 2011 06:16 AM

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You have really been through so much, may God bless you and give you a miraculous healing. When I was diagnosed with Non Hodgkins Lymphoma I happened upon a Dr. who had cancer and got well without meds.  I got a couple of her videos and found them to be really helpful.  If you are interested you can check her web site out at Drday.com  

One of the videos I really liked was: You can't improve on God

Carol

RE: Recurrent Non-hodgkins Lymphoma

by GrammaKitty on Fri Aug 05, 2011 10:40 AM

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Thanks for the message.  I know about Dr. Day and have gone to her website.  My husband doesn't believe her and so I haven't been able to try her method.

Last year I had my #1 cancer indolent small B cell follicular NHL and #3 cancer aggressive small B cell follicular NHL and it had gotten really aggressive.  Then about 1 yr. ago my left breast doubled in size almost over night.  I had a mamo, ultrasound, biopsy, CT/scan and PET/scan.  Under my left arm was the #3 cancer but the breast was a new cancer.  It was Diffuse large B cell follicular NHL.  It is highly aggressive.  It had comsumed my breast and had doubled it as well.  It was 95% cancer.  I had a double mastectomy and removal of lymph nodes under my left arm.  From this I have Lymphadema of the left arm.  I had the surgery in Oct. and started R-CHOP Dec. 1 and did okay.  Then I had another one on 23 Dec. but caught a cold from grandchildren.  Had to delay treatment an extra week.  Then I got another treatment and was so weak I had to stay in bed 24/7 from Jan. to Apr.  I had to have my treatment delayed another time and I had to have blood twice.  I didn't do the last 2 treatments because I was close to death twice. July 7th I had a CT/scan and PET/scan and my cancer had come back.  We don't know which one.  I saw an internationally known doctor who does research in NHL today.  He said I might qualify for a stem cell transplant.  But first I must have a pulmonary function test because I had lung damage from the ABVD back in '04.  He had them draw blood to make sure there aren't any cancer cells in my blood and if my counts are normal.  I have to have a biopsy to see which of the cancers it is.  If it is #1 cancer we will just watch and wait.  If it is #3 or #4 then we will do the stem cell transplant or if I can't try some new drugs.

I have made 10 wedding quilts for my 10 grandchildren because I don't expect to see any of them married.  They are 17 yrs. to 2 yrs.  The 4 in Germany don't know me and I haven't met the youngest.  Both daughters stopped communicating with me about the time of the first treatment.  Things have gotten worse and since daughter (local) with the 6 kids acts like I am invisible and didn't let me see the children for 1 yr.  They don't know what to do or say, so they pretty much stay away but will answer me if I talk to them.  Their mother ruined my relationships, with the 3 older ones.  The 8 yr. has Aspbergers and doesn't notice how she treats me so he hugs me and tells me he loves me.  The 6 yr. and 3 yr. don't know me very well because I haven't seen them much.  She wouldn't let me see the youngest for over a year so I never bonded with her.  She lets me read her books and feed her candy but that is about it.  The months I spent in bed I was too weak to do anything.  My husband brought me my medications and meals.  Other than that he left me alone.  I had 3 visits in 3 months.  I was so bored and lonely.  Everyone expects you have family that supports you.  Well, my family doesn't support me.  It's just God and me.  I guess he has His purposes in the way my life has gone for the last 23 yrs.  It just seems to get worse all the time.  I just keep going and doing.  I am always at church and small group bible study and Bible Study Fellowship and my Red Hat group.  That and the many trips to the hospital are the only outings I get.  I need prayers that I can survive for a while longer.  I have things I want to get done.  Quilts I want to make for family and friends and other things.  I just have so many projects on my mind because it just keeps coming up with more and I want to do them all.

Even though things have been really hard this last year, I have made it through once again.  In all, I have almost died 7 times but I guess God isn't ready for me yet.  I want my whole family (DH, DDs, Dsil and all 10 DGC) together in one place and to take pictures.  I want the cousins to get to know each other and I want the DGC from Germany to get to know me.  I want to be with my DD#1.  I've missed her these last 12+ yrs.  I want to be included in the family again and enjoy them for the time I have left.  I can't do anything to make them change.  I just don't react to their treatment of me.  I act as if nothing is wrong.  The only thing I can do is pray for them and my husband.

The doctor I saw today I have seen several times over the last 14+ yrs.  His name is Dr. Oliver Press.  My Primary Care Physician (at Madigan Army Medical Center) was roommates with him in college.  Small world.  Well, after my exam and our discussion I feel more hopeful than I did after seeing my Army Oncologist.  He sent me to Seattle to see if there was anything else that could be done.  I think he thought I was at the beginning of the end.

I hope all that read this will see how the spirit and God can get you through so much and still be a normal person ( sort of).  Be encouraged by my story and I wish the very best to all of you.  I hope for all to be cured from their cancers.

Kitty

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