Diffuse Large B Cell Lymphoma

nikkig43 said:

Hi Glacier,
My husband was diagnosed in January ( diffuse Large B Cell Lymphoma). He has now finished his 3 rounds of Chemo ( R-CHOP). Now, in a couple of weeks, he will start radiation.
I think the hardest part so far was the time it takes for all the staging tets. When the results were in and we knew what we were dealing with, it seemed easier to us. He handled the chemo pretty well. He has continued working throughout, except for a couple of days.
Just a word of encouragement, his oncologist told him that it is very curable. One of the best cancers to get, if you have to get it.
Try to keep your everyday life as normal as possible. Try to think positively.
Feel free to email me if you think I can help. ( nikkiguthmiller@gmail.com)
Take care, nikki

Nicki
Thanks for your words of encouragement. i had the same diagnosis in Jan 2009. I responded well to chemo. Never had radiation. I had stage 3. God bless his journey and you.

nikkig43 said:

Hi Glacier,
My husband was diagnosed in January ( diffuse Large B Cell Lymphoma). He has now finished his 3 rounds of Chemo ( R-CHOP). Now, in a couple of weeks, he will start radiation.
I think the hardest part so far was the time it takes for all the staging tets. When the results were in and we knew what we were dealing with, it seemed easier to us. He handled the chemo pretty well. He has continued working throughout, except for a couple of days.
Just a word of encouragement, his oncologist told him that it is very curable. One of the best cancers to get, if you have to get it.
Try to keep your everyday life as normal as possible. Try to think positively.
Feel free to email me if you think I can help. ( nikkiguthmiller@gmail.com)
Take care, nikki

thank you...
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.

DennisR said:

I had NHL stage 4 about 13
I had NHL stage 4 about 13 years ago and had resection surgery followed by R chop chemo and was NSD for 8 years. I had a recurrance in 2008 which required further chemo (different than R-Chop)until the tumor disappeared,followed by a stem cell transplant in Feb,2009. (Which is a whole 'nother story) So far I'm NSD again and doing very well. The chemo your husband is getting causes the joint and bone pain in between treatments. He will probably start getting some shots to promote his white cell production between suceeding treatments which in turn worsens the bone pain etc, it can be very difficult, but it kills the cancer and goes away when the treatments are completed, usually 8 sessions. I got some relief from accupuncture therapy while doing the chemo.

PLEASE HELP
Dennis, I really need to talk to someone who was in their 60s when they had stem cell transplant, would you please write back to me?
Thank you.
Regards.

nikkig43 said:

I hope your appointment went well.
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

so appreciative...
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 said:

So happy to hear from you.
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.

Diffuse Large B Cell lymphoma occular eye tumor
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.

cbpgill26 said:

Diffuse Large B Cell lymphoma occular eye tumor
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.

Hi Carol
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

nikkig43 said:

So happy to hear from you.
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.

hello again...
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

cbpgill26 said:

Diffuse Large B Cell lymphoma occular eye tumor
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.

To our Newbie, cbpgill26, from jhale17
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.

nikkig43 said:

Hi Cori
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.

hope that you and your husband are well...
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 said:

Cori,
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

so happy to hear...
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