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Diffuse Large B Cell Lymphoma

nikkig43
Posts: 73
Joined: Feb 2012

My husband has been recently diagnosed. Stage II A. He has had one R-CHOP infusion so far.
I'm very curious about other people's experience with the same diagnosis. How are you? Any advice?

nikkig43
Posts: 73
Joined: Feb 2012

God Bless you too!
Take care

glacier
Posts: 7
Joined: Mar 2012

thank you liz and nikki. it means a great deal to have people you can reach out to. people that understand just how scary this whole thing is. i see the oncologist this afternoon. i'm taking a small crew of people; one of them being a dear friend that has battled her own cancer for over 20 years. she's a wonderful person and i'm so appreciative of the support.
thank you both for the the words of encouragement. i do wish that we were meeting under very different circumstances. i will ask tons of questions for sure; i started a list once i was given a diagnosis. thank you for the tip liz.
nikki, i appreciate the optimism about cure. i feel very confident that this is beatable. i'm so happy to hear that your husband has handled his treatments well. i may take you up on the offer to e-mail very soon.
liz, i now feel very compelled to research your type of cancer to learn what you are going through. i hope that i can provide support for you as well through this journey.
thank you both for reaching out to me. i hope to be able to provide the same in return.

nikkig43
Posts: 73
Joined: Feb 2012

Hi Glacier,
I'm sure the doctor was able to answer your questions. I ask a lot of questions too, and I always feel much better after the appointment. I will be praying for a comfortable treatment and permanent cure for you!
Keep in touch. Take care,
Nikki

glacier
Posts: 7
Joined: Mar 2012

nikki,
the visit with the oncologist went very well, all things considered (i mean, i have "the cancer" to deal with :) . i feel very confident in his ability to treat me appropriately. i will start the RCHOP next friday. i'm pretty scared but comfortable in what is planned. had my bone marrow biopsy yesterday and that went well. a little sore today but not too bad. echo and pet scan on monday and then port placement on thursday so that i can get going with the chemo asap. it's a little overwhelming all of the appointments. i now truly know what it is like for a patient and i will only learn more as i go down the path. ( i know that i didn't mention it before, but i'm an operating room nurse and sometimes i'm not sure if that serves me better or worse. i have just enough knowledge to be scared out of my mind and not enough to really know what exactly will be happening to me over the next 6 months.) fortunately, i have some really great doctor friends that have made this whole experience significantly better and a little more comfortable. i at least feel safe in their care and that is soooo important when you're so vulnerable.
i'm so glad that your husband was in stage 2. very promising ! my oncologist is very confident in a cure as well. i will be in touch again very soon. i'm sure to have many questions for you in the upcoming weeks. thank you again for the support. please let me know if there is anything i can do for you or if i can answer any other questions that you have.

nikkig43
Posts: 73
Joined: Feb 2012

So happy to hear from you. I'm glad that you are getting through all of these tests. Things will settle down a little now.
I am also a nurse so I know what you mean about knowing just enough to be scared :)
My husband is feeling good. His repeat PET scan last week, after 3 R-CHOP infusions, showed no sign of cancer!! We are very happy. This type of cancer responds well to treatment, so I know you are going to be fine.
Just FYI, I learned something at the beginning of treatment. I asked Joel's oncologist if there are any extra vitamins and minerals he should be taking. Anything to boost his immune system or any " cancer fighters". He said absolutely not! There are certain things like Vitamin E, Selenium and Green tea that decrease the effects of chemo and may decrease his chance for a cure. I was really surprised by that. He is being treated at the Seattle Cancer Care Alliance by a top Lymphoma specialist. I really trust him.
Joel had no symptoms and felt really good before he started treatment. Then he had times where he didn't feel so good, although he felt well enough to continue working. I'm just saying that to let you know that even though you may not feel great for a while, it's only temporary. You will feel good again, I promise.
Keep in touch! I will be praying for you.

cbpgill26
Posts: 68
Joined: Mar 2012

Everyone seems to get lymphomas NHL or HL O I have a rare type of cancer (naturally) at a vibrant 68 and am ready to fight the world. I am crazy scared there seem to be no one that has had lymphoma of the eye. I'm thinking because they are no longer with us. I have a pet scan tomorrow ugh. More needles. I am thinking the worst all over me. I have had a bladder infection for two weeks an a couple of antibitics that don't seem to do anything. I am thinking OH OH there it is also. PCP said NO. I doubt him immensely. The onocologist said this was so rare he did not know how to go about treating this thing and sending me to MD Anderson in Houston. No word on the wait. Dear Lord the waits. I made myself an appt. at Shands in Gainsville Fl and got one on a Friday two weeks away. Then what wait some more? I read all I can about it an seems like a NO win situation. It either goes to your body or your brain or both and even the treatments are sometimes killer. I haven't a clue but I am crazy. I can see a disfigured face and tragedy. Can't get beyond OH my God. I have cut off all my friends and will not take a call and no visitors ever. I don't want them watching me die and them being happy it is not themselves. If anyone knows a survior of this mess. Please let me know. I am about to take this into my own hands. Help.

jimwins's picture
jimwins
Posts: 2021
Joined: Aug 2011

Hey, I understand the fear. Can't remember for sure (chemo brain) but I think
your name is "Carol"?

Researching is great but it can also scare the "daylights" out of you so take
everything you read with a grain of salt. There is hope here :).

As you said, the way your cancer showed up is rare - so the fact you haven't
found any survivors yet on this site doesn't mean there aren't any.
Many survivors and caregivers go on with their lives and don't visit here like they did when they needed support and that's perfectly okay.

Diffuse Large B Cell Lymphoma is very treatable and curable. Please try to focus
on that :). Most of us have been where you are and we're all scared too.

Talk to your oncologist or PCP about anti-anxiety medication - it can really help.
Find out if there are any local support groups in your area and your care team
should be able to refer you to some counseling that could be valuable as well.

As you said, you're "vibrant" so you already have a lot of fuel to kick
this thing in the butt! You just may need a little help along the way like
all of us :).

I know how hard this is for you. Your enemy is cancer - not yourself.
This is a horrible nightmare to have to deal with but you can do it.
I know you can and you are not alone here.

Giant and warm hugs,

Jim
DX: DLBL 4/2011, Chemo completed 10/2011, currently in remission. :)
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anliperez915's picture
anliperez915
Posts: 751
Joined: Sep 2011

Hi Carol,
I'm really sorry that you are having a really hard time right now! It can be really depressing and sometimes we just need help processing a news like this. Please hang in there Carol, I also got depressed when I was told I had cancer but I know you can beat it just like many people have done it and are still doing it! Talking to people about it can sometimes be very helpful, if you don't want to talk to your friends or family about it maybe you can go see a counselor or join a support group in your area. I did, I was referred to see a counselor because I couldn't stop crying for a while and she really did help (I promise that it will help you). Please just don't ever give up and you are stronger than you think that you are! I will be keeping you in my prayers and sending you a (((HUGE HUG))). Take care Sweet lady!

Sincerely,
Liz

jhale17's picture
jhale17
Posts: 9
Joined: Jan 2012

Dear Cbpgill26

Diffuse Large B Cell Lymphoma has occurred four times in different places in my body over eleven years. Wherever it showed up the treatments has always been systemically administered with chemo and the first occurrence has some safe guard external radiation on my throat. The only cutting was to get a biopsy. I have been cut on twice and it does not show. You have a blood cancer and systemic treatment seeks out the cancer wherever it exist. That sounds better good to me.

These days they are using targeted chemo that goes after only B cells which helps the patient. Older chemo’s are also used.

I am just completing my fourth occurrences of DLBCL with good response to Treanda and along with Rituxan, I love Rituxan, for me there are no side effects. The Treanda has given me little side effects and with good results. You may be assigned something else as there are a large number of chemo’s to choose from.

I do not know how you feel because I am not you. I feel pretty sure it is not good. You are a newbie and what you are going through often happens to new patients. You should know and recognize this is a phase for you to go through and you will survive this phase. Once you buy in to the fact that there will be waiting times for information, processing and that you will survive these it will help you deal. I still do not like the wait times but I have learned to deal with them. Please say to yourself that you can do this as it will let you sleep at night. I wish you good luck with the treatments that is to be selected for you.

I liked what was told to me so long ago by my doctor. “You will be inconvenienced, you will get thought this and if it comes back it is easily treatable”. So far my doctor has been right!

I am holding good thoughts for you.

glacier
Posts: 7
Joined: Mar 2012

nikki,
thank you for more words of encouragement. i have been trying to get onto the website with poor luck the last week. i think the server gets too busy and it won't let me in to the discussion board. it's very nice to know that you are also a nurse. you have a large knowledge base i'm sure and i'm finding it a blessing and a curse. i appreciate the advice on the vitamins. i have taken a lot of supplements up until recently and my oncologist said he was open to it but that he wanted to look closely at everything before i took it. i agreed but there are a few homeopathics that i'm feeling like would be good for GI disturbances. i still need to have them looked over by him and i will let you know what he says. i don't want to compromise the chemo treatments but there is some really good products made in germany that target your lymph system, liver and kidneys. and as you know they are your major filter organs. i'm am not taking anything currently until i get the thumbs up though.
i have my port placed 2 weeks ago and did my first R-CHOP treatment on the next day. i was really full of anxiety but the treatment went very smoothly. staging came back and i'm a 1A. i'm feeling really blessed to have caught this incidentally. but i did have a 6 cm mass sitting in my mediastinum. crazy that i wasn't having any cardiac symptoms from compression on my vena cava. the way that they diagnoseed me was after performing a VATS procedure. had to recover from that too. it was a pretty big surgery and i was just thankful that i didn't have to have a sternotomy had it been a thymic lesion.
so far the biggest battle has been the nausea. and the prednisone wasn't pleasant for trying to sleep at night. i'm finding that ativan has been useful for that. ginger has also made a big difference in helping with GI problems. my oncologist actually encouraged me to purchase ginger capsules at out local co-op. there is a lot of research backing it's effectiveness and it is also a powerful anti-inflammatory. he said it was perfectly okay to use with the chemo so i will be doing that. he said to take it 3 days before treatment and for the 5 days following since that's when i'm most nauseated. other than those 2 side effects i'm rather pleased with how i'm feeling. i'm able to get out everyday for a long walk. sometimes 2. that has been very therapeutic. i'm planning on staying off of work for awhile. there is a lot of exposure to germs in the OR. we drew counts on day 7 and it was amazing how much i dropped from pre-chemo treatment. not so bad that i'm running around with a mask but enough to make me think twice about hanging out in crowded public spaces. trying to do my best to not obsess about the germs but i'm being careful for sure.
i'm very happy to hear that your husband is doing well. three treatments seems nice compared to 6 and from what i understand it used to be a course of 8. i'm okay with the 6. no radiation planned for now. i'm actually relieved for that. location wise it would have scatter to my breast tissue and possibly my thyroid. i really want to avoid any of those issues down the road. how are you husbands spirits ? i hope good. it's so important. how are you doing ? it's a very big thing to support someone through the "big C." your role in his getting better is admirable. you sound very supportive and present. i have to give you kudos for that. and you being available for others is very kind.
thank you again for sharing your experiences. please don't hesitate to ask me if you have any questions that i may be able to answer. tell your husband that i am sending positive thoughts his way. and for you a hug of gratitude. i hope the rest of your day is wonderful.

cori

nikkig43
Posts: 73
Joined: Feb 2012

Ive been having trouble with the site too.
Sounds like you are doing well. I'm so happy that you are starting treatment in an early stage. This type of cancer responds well to R-CHOP. My husband had the most trouble with the Prednisone. During the first round, he refused to take Ativan to help him sleep at night. He refused to add more drugs to his body since he already felt "violated" by the infusion meds. The doctor and I convinced him during the second round and he felt much better. Take each day one at a time. This will all be a distant memory soon.
Take care and keep in touch.
Nikki.

glacier
Posts: 7
Joined: Mar 2012

nikki,
just finished my second round of chemo on friday. felt pretty good yesterday and today. been out walking and doing some of my normal everyday things. i feel good once the heavy nausea subsides. did you say your husband has worked through most of his treatments ? i have to give him kudos for that. i really don't know how he is doing it. i wouldn't feel strong enough to make it through an entire shift. i have decided to take the summer off and just focus on getting better.
i know how your husband feels about all the meds being "a violation." i made the ativan mistake my first round and now i'm so thankful for it. it actually allows you to get through the night restfully.
how are you holding up ? this is a big process for you and your family. i hope that you are taking good care of yourself as well. please keep me updated on things. i really appreciate your words of encouragement. they mean a lot.

cori

nikkig43
Posts: 73
Joined: Feb 2012

I think taking the summer off to focus on healing is awesome. Good for you. Second round is done. Only 4 more to go, right? My husband did not have any problem with nausea. He didn't feel like himself for the 5 days he was on the prednisone, but the next 2 weeks he felt great. Then it was time for another round. Yes, he has been working throughout his treatment. That has been very important to him. Now that the weather is improving, he has been spending the weekends working in the yard. He's pretty amazing!! He's very cute though. He never complains. The only way I know that he's not feeling well is when he gets quiet. He always tells me that he's feeling good. I have to say that he's been a little cranky since starting radiation. He has to drive into downtown Seattle every weekday for a month, for his treatment. It's about 45 minutes from our house without traffic, but there is always traffic! Haha. Poor guy. We asked his radiologist about getting his treatment at a community hospital closer to home, but he said he wouldn't advise it since he was THE guy to go to. He said doctors all over the city send their tough cases to him. Although we kind of snickered at his arrogance, we agreed that we wanted the best. Joel has had 5 radiation treatments so far, 16 more to go. My biggest concern is that it took so long between his last chemo and the radiation to begin. It was 6 1/2 weeks. Initially, he said he wanted to start after 4 weeks. I pray that it won't affect his outcome. The radiologist kept saying he needed a few more days to prepare. I emailed his oncologist to get his opinion and he said " I think it's OK". That didn't ease my fear. I have decided to think positively. I'm sure they know what they are doing, right?
Im doing OK. I don't sleep well. I need more exercise. The weather is improving now so I need to get outside and walk. Sounds like you enjoy your walks. We live near the mountains with hundreds of hiking trails within 1/2 hour from here. I love hiking. It's been raining so much until last week, but lately it's been beautiful.
I really enjoy our conversations Cori. Stay positive. Everything is going to be OK for you an my Joel. I just know it. You are in my prayers!
Nikki

glacier
Posts: 7
Joined: Mar 2012

nikki,
i'm so happy to hear that joel has done so well. the radiation treatments sound really rough. i hope that both of you can keep your spirits up throughout them. i love your positive attitude. as you know, it makes all of the difference. and we all have so much to be positive about as well. we are very fortunate to have found the cancers when we did and are able to access the resources to cure it. i can't even begin to count the blessings for that. your husband sounds amazing and very tough. it's inspiring to hear that he is in the yard working on the weekends. i wish i could enjoy that, but honestly yard work isn't my favorite chore. in fact, i would prefer to never do it again. my partner is holding up that end of the house projects and i am thankful for that. i'll do dishes and laundry any day.
i'm don't think that the few extra weeks between chemo and radiation will affect your husbands outcome. it is hard to trust, though, especially when you're so worried. i will be thinking positive thoughts for you and your family. i know that we can get through this. i truly believe that everything happens for a reason. who knows what the reason is but there is a reason.
my hope for you is better sleep, more exercise and less worry. the trails near you sound very appealing. i think nature is an incredible medicine. keep smiling. you and your husband are getting closer to being done. with much respect.

cori

nikkig43
Posts: 73
Joined: Feb 2012

Thank you for your kind words. I needed that :)
Let's keep in touch. I will be anxious to know how you're feeling. My email is nikkiguthmiller@gmail.com
Take care, Nikki

katiekatjacob
Posts: 8
Joined: Apr 2012

Even though it's diffuse, B cell Lymphoma still has a high survivor rate. At the same time, Dr. Steven Noga advises to treat it quickly, because this guy spreads rapidly! https://www.healthtap.com/user_questions/25801-how-quickly-should-treatment-start-for-diffuse-large-b-cell-lymphoma

sbrown0633
Posts: 2
Joined: May 2012

Dr. Noga is my doctor too. i really like him.

sbrown0633
Posts: 2
Joined: May 2012

I was diagnosed 3 months ago after months of pain and 4 MRIs, 3 X-RAYs, a sonogram and numerous doctors appointments. I could not get the Doctors to believe that there was something wrong with my leg. It got so bad that I could no longer drive to work. I have Systemic Lupus, I've had a heart attack and triple bypass and valve replacement. Plus a couple of other problems that I wont go into here. Finally, my reumatologist saw a mass in my hip. I had a biopsy done at Johns Hopkins, and was diagnosed with Diffuse Large B-Cell Lymphoma. Dont know what stage, but the tumor has been happily growing in my hip and was starting to infuse the bone, since last june. I will have my third chemo treatment on tuesday, May 22. The chemo has not been too bad at all really. I have not gotten sick to my stomach, I have lost my hair, which came out in clumps, so when it started landing in my dinner plate. I went to the Harry and Jeanette Wienberg Cancer center and had them shave my head. The worst part about the whole thing is a Neulasta shot the day after the chemo has really kicked my butt. Since the chemo kills your white blood cells, the Neulasta is supposed to help re-build the cells. Gives me back spasms and makes me feel tired, achy, and hot and cold flashes. Hope this helps.

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 1081
Joined: May 2012

Neulasta caused me severe back pain after my first shot, mostly because I had broken my back in an auto accident, and had two collapsed disks adjacent to the compression fracture. I had to go to a half-dose, but the half-dose kept my WBC count well up. You may want to ask your doc about a half-dose, if the pain persists. It worked well for me.

Max

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glacier
Posts: 7
Joined: Mar 2012

hey there max and sbrown. just wanted to pass on what my oncologist and the chemo pharmacist told me for alleviating the pain from neulasta. they suggested taking claritin. you can get it over the counter and it's reasonably priced. ask your oncologist and the pharmacists that are mixing your chemo next time what they think of this and if they know about it. i took it they way they suggested for my first shot and had absolutely no pain. the second time i missed two doses and have had the low back pain and the temperature regulation issues. i won't be forgetting to take it next treatment for sure. it's just a suggestion and it worked for me. i hope it can help you as well.

jhale17's picture
jhale17
Posts: 9
Joined: Jan 2012

Over the years I have had 14 Neulasta shots. Most of them had mild side effects. However, the last one gave me extreme pain at the base of my spine the day after the injection. I had to take a strong pain med to get to sleep.

I mentioned this the next time I met with my doctor. His advice was to take Claritin the day before, the day of and the day after the Neulasta injection.

That last chemo was the finish of my six Treanda treatments and I am now in remission. Let’s hope my next reoccurrence of cancer comes after I die of something else.

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 1081
Joined: May 2012

jhale,

I was 53 when on chemo (4 years ago). My first neulasta shot put me into severe back pain, but I had been crushed in an auto accident 25 years earlier, and had a broken back full of arthritis(compression fracture at T-9, with two collapes disks).  My doctor cut the dose in half for me, and everything went fine from that point on. I did not have pain  with the shot thereafter (I received 11 more over the next six months).  Also, the half-dose controlled my WBC counts.   I had to take Loritab for muscle pain (several of the drugs in r-abvd cause muscle pain and flu-like symptoms). It was just that bad.  Over the counter just would not do it for me.  I walked away from the drug with no problems at all after treatment ended, but I have never had an addictive personality or physiology.  Wishing you well (C.R. four years out),

max

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 1081
Joined: May 2012

jhale,

Sorry to repeat much of what I had said just above.  I find these threads hard to navigate, EXTREMELY slow to load, and just put down what I feel might be relevant and helpful at the time. I just scan what is new every few days, and focus on what I am familiar with.   It would take a long time to go through everything new here on a daily basis.

(Plus -- maybe a little chemo fog left !!)

max

shellsmith73
Posts: 1
Joined: Feb 2013

Hi,

 

I just wanted to let you know, that I too was diagnosed with B-Cell Lymphoma. I was diagnosed in September of 2010.  I went through all the testing and scans. They found that I had a tumor in my colon and were deciding on what direction they wanted to go surgery vs. chemotherapy when I got extremely sick and was admitted to the hospital in November of 2010.  After waiting for 1 week  they decided to go in and do surgery and found that I had another tumor blocking my small intestine. They removed both tumors and decided to watch and wait since they removed the immediate concern. In August of 2011 I starting having serious stomach problems and my oncologist decided to start chemotherapy as it was  my only option since I was stage III. I had a port put in and starting chemo three days later.  After 6 treatments, I found out I was in remission in January of 2012 and  have been that way since. I did the R-CHOP therapy and really did not have any serious complications other than losing my hair.  I wish you all the best and feel free to contact me any time!

 

Shelley

tdbd02
Posts: 1
Joined: Feb 2013

Hello all. I am new to the site. I was diagnosed in September 2011 with NHL Diffuse Large B Cell Lymphoma Stage III-A.  Being young (49) and in good health, the survival rate was good. After 6 RCHOP treatments, and 24 rounds of radiation, I am considered in remission. Most of what I experienced has been discussed here. I received Neulasta shots, and yes, it caused some intense bone pain about aa week after, but that got better with each treatment.  Everyone is a little different, but all should know they are not alone. I have a much greater appreciation for those fundraisers and things now.  We all benefit from their research and from those that have battled this before us.

The most important thing that helped me was to know that whatever the outcome, God is going to take care of me. He gave me such a peace about it all, and he stil does. 

Secondly, if you have radiation near the esophagus, I highly recommend my doctor's remedy for throat pain from swallowing. Drink olive oil immediately prior to your treatment. He recommended a certain brand of olive oil, Lucini.  Supposedly, the olives are higher in whatever it is that helps. I was told to drink two tablespoons three times a day, but I chose my own dose.  I took two tablespoons with me in a small plastic container and drank it in the radiation room within one minute of the process. I had no issues at all with swallowing for the duration of the treatments.

 

 

 

 

veedub's picture
veedub
Posts: 42
Joined: Jul 2012

i was diagnosed with diffuse large  B cell lymphoma, stage 3, last july. i had six cycles of R-CHOP (plus Neulasta after each treatment as i was getting a bit short in the WBC department)  and after the last treatment in november my PET scan showed me clear of cancer except for one small spot which they are keeping an eye on. i have an appt. with the onc next month and another PET scan in june. i feel sooooooo much better. during the last four cycles i had amazingly awful fatigue and major mood swings, but i never became nauseous. i have been using tinctures and edibles of medical cannabis to prevent nausea and to help me sleep at night, which worked wonderfully.  so although the post-treatment experience was gruelling, once the effects of the last cycle wore off i have been feeling good, taking a lot of exercise, and happy to be here.

i know that DLBL tends to re-occur (in fact i have met several people who have had multiple reocurrences), but i'm not going to worry about it until/unless it happens. because the thing about worrying is that you have to go through the bad experience twice, once when you're worrying and once when it actually happens. in a completely unforeseen way, i feel very very lucky to have had the experience, because i have learned a whole lot about myself. and if it happens again i will have the option, depending on my age and physical condition, of going through treatment again or just letting it take its course. i'm coming up on 75 this year, and still happy to be alive. if it happens again in 20 years, that might be the time to just hit the pain-killers and say "forget it" to anything more invasive. i've never been fond of the idea of living no matter what shape i'm in. it all depends on whether i feel i still have things to do or not. and right now i have immense amounts of things to do.

everyone's experience is different, even with a similar diagnosis. i do recommend medical cannabis if you are in a state where it's legal. and it's really helpful to get together whenever you can with other cancer survivors, because we are the strongest people in the world, no lie.Cool

bb

v

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 1081
Joined: May 2012

Vee,

You are looking great in your new photo, and I am glad that you are obviously feeling much better. (Myself -- I have gone to the dogs ! [see photo]. )

max

norton67
Posts: 1
Joined: Feb 2013

my husband was diagnosed with large b cell lymphoma, stage 1 in Oct. Tomorrow is #6 RCHOP .. It is a fight for sure.

He has had a difficult time dealing with this .. especially the fatigue.  Recently started an antidepressent. Should have done that sooner.  His amazing doctor feels the cancer is gone (from a small spot on spine) and that he will be cured .. not just remission .. and yet he doesn't feel hopeful.

Being a caregive is a struggle too. Happy I found this sight.

 

 

LOVEOFMYLIFE
Posts: 4
Joined: Feb 2010

My husband was diagnosed in late 2009. He was 2 weeks away from deaths door. His bone marrow was almost 100% full of cancer. He had 8 cycles of RCHOP and was very ill but your husband's experience may be totally different. In my husband's case he went into septic shock and required several blood and platelet transfusions. He was hospitalized 12 times in an 8 month period. He had tumors on his spine and could have become permanently paralyzed so they gave high doses of steroids, radiation, spinal chemo and then R-CHOP. Time was of the essence so he got hit with a lot in a very short period of time. He was in remission for two years but just relapsed and is already at stage 3 eventhough they were doing CAT scans every three months. He starts RICE and then he goes for a stem cell transplant. Hoping for the best expecting the worst.

illead's picture
illead
Posts: 524
Joined: Aug 2012

You are facing what we all dread.  My husband is in remission with Mantle Cell.  Like your husband, he was on death's door with 90% of his bone marrow packed.  I can only imagine what you are going through, I go through it in my head all the time.  Our thoughts are with you and we are hoping for a good outcome.  They are on top of it this time so that is in his favor.  You know you are not alone, we all care.  Bill and Becky

Zedo's picture
Zedo
Posts: 1
Joined: Apr 2013

Hi, everyone. I was recently diagosed with Stage II B NHL, but have yet to start treatment (insurance dillemma)

The Company:
While waiting to start therapy, I have done a lot of research, including a visit to the corporate headquarters of Biovest here in Tampa  http://en.wikipedia.org/wiki/Biovest
who are the makers of BiovaxID  http://www.biovest.com/cancer-vaccine-technology/biovaxidr/personalized-cancer-vaccine

The History:
They were very nice people, however were quite frustrated that the FDA has forced them to redo clinical trials over a trivial technicality. This put a great strain of the companies finacials, and they have since filed for chapter 11 protection and are currently pursuing approvals from Europe and Canada, who have accepted the basis of the initial completed clinical trials.
http://www.businesswire.com/news/home/20130307006417/en/Biovest-Files-Recapitalization-Plan-Strengthen-Balance-Sheet

If you live in Europe or Canada, this treatment may be available to you soon. If you live in the US, the trials will be starting again shortly, as soon as they are set up to take and freeze/store biopsy samples.  4 months ago, the director told me they would be ready to restart clinical trials in the US in 3-5 months, so Im assuming they should be starting trials soon.

The Catch:
Providing the biopy sample for BiovaxID *must* be step one in your treatment plan. They need to aquire a pristine sample of your cancer before any other treatment begins. The sample would then be frozen until you complete your other therapy, at which point they would manufacture your personalized therapy from the stored sample.

Additionally:
I was informed that if you have a small low stage tumor, that BiovaxID may be the ONLY required therapy you would need, as in no chemotherapy of any kind would be required.  BiovaxID can both kill the cancer and reduce the tumor to an extent, plus provide the vaccine effect for about 8-10 years. This is great news, because if they could start catching these lymphoma cancers earlier on, this would practically be a cure with almost no negative side effects.

As soon as I have a good day, I plan to re-visit Biovest to get a current update directly from them, since the webpage seems to be a little dated. I'll post any follow-up news here.

illead's picture
illead
Posts: 524
Joined: Aug 2012

Thank you so much for sharing such good information.  We always like to hear whatever is new.  Welcome to this site.  You will find some very nice caring people here who will be a good support as you need us.  My husband is a year in remission with Mantle Cell Lymphoma but there will be those who have your type commenting.  We sure hope your ins. straightens out soon and you can start your treatment.  Most of us have successful stories to tell.  Know that you are not alone. Bill & Becky

djblauw65's picture
djblauw65
Posts: 2
Joined: Feb 2014

nikkig43

I am new here and was reading your blog.  I was diagnosed January 27, 2011.  I had gone with a friend to visit her step mom and she had 2 cats, 2 dogs, 2 birds, and 2 rooster hatchlings in her house with a lot of dust and other stuff.  She is in her 80s and lives on a small farm.  I reacted allergiclly and things progressed from there to coughing, choking and having trouble breathing.  I was working as a caregiver and had no medical insurance.  Fortunately I live in the Seattle area and went to Harborview Medical Center that is tied in with the UW Medical Center and they have a great program along with what the state offers for those without insurance.

Anyway, 2 of my friends took me to Harborview ER January 26th after work and my journey began.  Dr. Sardesai just happened to be in surgery that night and after x-ray and CT Scan  which found a mass growing into my thyroid I was taken to surgery for a tracheotomy and biopsy.  I was admitted to the hospital and spent about 15 days there.  While there they did a swallow study and found I was aspirating and a nasal gastric feeding tube was inserted fortunately my ENT tested again and it was removed in about a week.  I was stage 1.  A PET Scan was also done to determine the extent and the only place that lit up was the mass.  Bone marrow was also negative.

I had 3 infusions of Rituxin 21 days apart and 4 weeks of radiation following.  For radiation they made a mask out of this mesh that hardened on my face.  My radiation sessions were very short and as long as I closed my eyes before they put the mask on and kept them closed I had no problem getting through each session.  One session I had to get them to let me up because I began to choke and I got that under control and we resumed and had no further problems.

I had no nausea during chemo and only once during radiation.  Started on one of the anti-nausea meds they had given me and finally weaned myself off.  I know it was a God thing that it was localized in the mass and the entire team of people involved in my treatment were amazing.  I know God gave each one to me because they are people that listen and truly care about the people entrusted to their care.

I am in remission and at my last visit with my medical oncologist she told me they are no longer doing the scans because they are not really finding relapse with them.  It is usually the doctor or the patient that finds a lump or other symptoms that arise.  So I have had my last scan and am glad about that.

Just wanted to let you know there is another person out there that has gone through this and knows what it is like.  I will be praying for both of you.

Also wanted to tell you about another free website that is a great way to keep family and friends updated on how things are going.  Do not know if you know about CaringBridge but I used it for my son when he had to be put on the heart transplant list in 2010 and again when as I am walking through this process.

Just know this was no surprise to God and He is all over it and will see you through.  I could not have done it without the prayers of people around the world that cared enouogh to lift my name heavenward.

Sorry this is so long just wanted to let you know God is good and I care too.  By the way I was going on 62 when I was diagnosed and I now take much better care of myself.  I start my day with a fruit smoothie and try to eat as much fresh fruit and veggies and organic and nonprocesed foods as possible and stay away from sugar (this is not easy).

Once again take care.

Donna Blauw

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 1081
Joined: May 2012

Donna,

Welcome aboard the Boards here. You story is quite interesting, and I admire your attitude and faith.

Logistically, in the hope of being helpful, I want to mention that you are responding to a two year old post. Nothing wrong with that, of course, but you may find that many of the folks involved then have (or have not) moved on, and you may not get a response to something that old for some time. (The date that a post is made is  always in the top-right corner.)

 

You say you were diagnosed when 62 ?  I am not trying to be flattering, but you look like you are in your 30s in the photo attached.  Keep on that health regimin !  It is working !

max

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