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Non Hodgkins Lymphoma Success

bluerose's picture
bluerose
Posts: 1089
Joined: Jul 2009

I am in a doctor's lobby waiting for my appointment so can't go into all the details of my history with non hodgkins lymphoma but the main point is one of hope. I am a 20 year cancer survivor having had one recurrance which led to a bone marrow transplant 2 years later that saved my life.

Today is a new day in cancer treatments and even though my treatments were so long ago here I am to tell you that cancer can be cured, the doctors use the word and I will take that. Twenty five years before I was diagnosed my Grandmother had the same kind of lymphoma and there was nothing they could do, no bone marrow treatments were in sight then and no chemo drugs like the ones we have today and radiation differences that today serve us much better as patients than in years gone by. She had no chance and died of her illness. Flash forward to 20 years ago and look at all that changed. How much more will change in the next 20 years?

Have faith and make the tough decisions and with support and faith and good doctors who can relate to you and you to them, you can do it too.

Blessings, Bluerose

catwink22's picture
catwink22
Posts: 239
Joined: Sep 2009

Thank you Bluerose for your inspirational words! It is indeed miraculous to see how far treatments and diagnosis' have progressed. I am still amazed that my cancer is being treated with something other than chemo or radiation. Only a year ago I wouldn't have thought that to be possible. I can't imagine what is was like having to deal with this disease 20 years ago, it must have been a much more frightening experience. Hurray to you for making it through and giving us all the hope and courage to move forward in our own battle. Wishing you good health and happiness with deepest gratitude!
Cat

bluerose's picture
bluerose
Posts: 1089
Joined: Jul 2009

Thanks for you nice comments in reply to my posting. I am happy to hear that you are well and got through your treatments as you did.

Yes it was interesting 20 years ago in cancer treatment but exciting too with stem cells just starting to be introduced for my kind of cancer - to that point they only did bone marrow transplants for leukemia patients - not hodgkins patients but they do now. I also remember that when I was first diagnosed they didn't have good anti nausea drugs and that was not funny with chemo but flash forward 2 years later when the NHL reared it's ugly head again that they did have very good anti nausea mediations and that made all the difference in treatments for me for sure.

Think what they will have for patients in the next 20 years? Hopefully the answer to that will be A CURE for all cancers.

Take care.

Bluerose

JoanieP's picture
JoanieP
Posts: 573
Joined: Mar 2010

HI
Good to see you all posting. Bluerose thanks for giving Cat and I encouragement. It will be 3 years this Jan that I was diagnosed. My PET scan is Wed. and results the day after. I keep repeating my favorite Bible verse. Trust in the Lord with all your heart and lean not on your own understanding. In all your ways acknowledge him and HE will direct your path. Your relapse, Bluerose, was a blessing because your BMT has given you a long remission and CURE. I know what ever the Dr tell me on Thursday it is NOT in my control and God will lead my path. That is what I know for sure but my human emotions are a little anxious:) It has been a year since my last scan. I have chosen to have other tests but only scan once a year.

JoanieP's picture
JoanieP
Posts: 573
Joined: Mar 2010

HI
Good to see you all posting. Bluerose thanks for giving Cat and I encouragement. It will be 3 years this Jan that I was diagnosed. My PET scan is Wed. and results the day after. I keep repeating my favorite Bible verse. Trust in the Lord with all your heart and lean not on your own understanding. In all your ways acknowledge him and HE will direct your path. Your relapse, Bluerose, was a blessing because your BMT has given you a long remission and CURE. I know what ever the Dr tell me on Thursday it is NOT in my control and God will lead my path. That is what I know for sure but my human emotions are a little anxious:) It has been a year since my last scan. I have chosen to have other tests but only scan once a year.

Linda56
Posts: 3
Joined: Apr 2010

Cat - Hi! I am a new patient and will be doing my third round of treatments next week, what kind of treatment are you receiving if not chemo or radation?

Linda

catwink22's picture
catwink22
Posts: 239
Joined: Sep 2009

Hi Linda,
I am receiving Rituxin which is a monoclonal antibody. Basically it's a manmade guided missile that marks lymphoma cells so your own immune system will kill them. I have had three treatments, one more to go and then a scan in July will tell me if it worked. It is also used with chemo but because I am not having the "B" symptoms (night sweats, weight loss, fatigue) my onc felt it wasn't necessary for me to have chemo. Keeping my fingers crossed!
Cat

razmataz
Posts: 1
Joined: Oct 2012

diagnosed via lymph node biopsy after double mastectomy. Am upset and not sure what is next.\

Jeen's picture
Jeen
Posts: 24
Joined: Mar 2012

Hi

I have had a mastectomy too and am also trying to find my way through this diagnosis, as it is new to me as well. Knowledge is a real anxiety reducer, and I have found everyone here to be very responsive.....This disease is very different form breast cancer,,,as it is more individual, and treatment follows that. Stay strong, and keep on! That's what I tell myself....

Jeen

1ladydiamond
Posts: 28
Joined: Oct 2012

Hi i was just diagnosed with follicular b cell lymphoma stage 4 it is a low grade slow moving cancer. I had a choice of watching and waiting but i discussed it with my doc and i started doing Rutixan in April of this year i was just diagnosed with it this April. I took it for each week until July then it has been each month July and August and Sept and Oct now i take it every 8 weeks i am so glad i did it. It has scaled back so much i am feeling so much better. Steroids is a major factor in it because it helps me from getting reactions which is not the normal with most people. Taking action instead of watching and waiting has added yrs to my life. They say 8-10 yrs is the life span but you can life far beyond that number. I feel and so does my doctor that taking action has added more yrs to me. My immune system is down of course especially after treatment so i have to be careful not to be around others that are sick with colds and virus. But overall i have a normal life tired alot but still enjoying life. So please don't be discouraged about this. Of all the cancers this is far the better one. So we are truly blessed my friend. If you have any more questions or would just like to talk you can reach me at first_ladydiamond on yahoo. Oh yes eventually it will come back to where it was but many yrs from now and yes it will keep happening and of course agressive treatment will happen but for now this is good. But please don't be discouraged
Patricia

winthefight's picture
winthefight
Posts: 162
Joined: Dec 2007

Blue,

Thank you for those words of encouragement. It is indeed a pleasure chatting with you. I have missed you in the chat room and am glad you continue to walk in your healing.

I hope to see you in the room soon.

Take care and be blessed.

bluerose's picture
bluerose
Posts: 1089
Joined: Jul 2009

I have been in the chatroom most days in the morning and sometimes afternoon, have you been in? Hope to see you soon in there.

How are things going? I hope well.

Take care my friend and again, hope to see you soon.

Blessings, Bluerose

merrywinner's picture
merrywinner
Posts: 620
Joined: Aug 2009

What an uplifting and encouraging story to read. Thank you also for taking the time to share it as we all benefit in some way from the success's of others. It offers hope and comfort. Continued good luck and blessings to you. Mary

bluerose's picture
bluerose
Posts: 1089
Joined: Jul 2009

Hi Mary,

Thanks for your nice response to my posting. The way I look at this journey with cancer is that if we had to go through all that all survivors have to go though and can't share with others afterwards with all we have learned then what was the point of it all? This site allows us to support and validate those that follow us or are walking beside us in their treatments and I know that I sure would have loved to be on a site like this when I went through my cancer so long ago.

You didn't say much about your fight with cancer or if you are a caregiver but regardless I hope that things have settled down for you and yours. Cancer is indeed a family illness when it strikes someone we love in our family. Hope you have alot of support around you.

Blessings, Bluerose

curecancer
Posts: 8
Joined: Jan 2006

Dear Blue,
You are quite an inspiration to us all. There is something about you everytime I see you in chat, you bring a smile to my face and for sure a giggle. Thank you very much for sharing.
Love ya,
Patty
Let's find the Cure!!!

bluerose's picture
bluerose
Posts: 1089
Joined: Jul 2009

Glad you posted because I wanted to apologize for not getting back into the room while you were in there. One phone call led to another and before I knew it you were gone when I got back. Sorry about that.

You know the story behind my blue angel symbol don'tcha? If your eyesight is as bad as mine is it looks like a bluerose. lol. Well to me it does.

Thanks for your kind words and chat friendship. All the best to you cure, keep fighting the good fight - I know you will.

Love ya back,
Bluerose
It's just a matter of time before the cure is found !!! Hey it already happened to me and countless others. We are on our way to full on cures for all and cancer is on it's way - OUT.

COBRA666's picture
COBRA666
Posts: 2418
Joined: May 2010

Bluerose,I am fairly new to this site. What kind of lymphoma did you have? or do you have? I know you are a world of info on the subject. Just how far do you feel they have come with follicular lymphoma in the past 20 years. I was diagnosed in april with it and was told to wait and watch. Last month after my BMB which was postive with very little invasion, but none the less it was there. It put me at stage 4 with no B symtoms. I start R-chop next week. I am sure they have come a long way in 20 years but never having to look it up to now sort of puts me in the dark about any progress. thanks, john

bluerose's picture
bluerose
Posts: 1089
Joined: Jul 2009

I'm embarassed to say this but I really don't know how far they have come with follicular NHL treatments from say 20 years ago when I was diagnosed. I keep meaning to ask oncologists about it so I have a good answer but I just never think to, I will at some point when I go for a checkup which will be at the end of the month.

I keep forgetting what kind I had but the word follicular is familiar as well as 'mixed cleaved cells'. I have the diagnosis sheet and will look it up today at some point - silly I don't know it offhand.

I do know though that even 20 years ago lives were being saved through bone marrow transplants which were just starting to be done for NHL, before that they were only done for leukemia, and it was the beginning of stem cell transplants and I received a little of stem cell too which I swear is what made the difference for me.

I was given the option of the wait and see but I am too 'want it done yesterday' in attitude, lol, Type A personality, and so I just couldnt wait but I know many do and have success. The only way to know is to trust in your doctors and with their input and your gut feelings best to go with that. I had the transplant on a recurrance, first diagnosis was only a year and a half early and that is when I had the CHOP treatments. This R CHOP is new to me so that must be the addition of a new drug.

I am sure they have added and maybe even deleted some of the treatments from 20 years ago but I am going to ask so that I can get a better picture myself of how things have changed. Of course cancer treatment is an individual thing as people are all different so lots of variables.

I know that total body radiation is done a little differently today than when I was zapped but again they use a few different styles depending on the extent of disease and where in each person. I had saline bags put all over me, buried in them actually, when I had my radiation for total body and now I hear they are using sand in the bags instead as they feel it is more exact but that is only for that specific kind of radiation technique, there are several.

I wish you all the best in your treatments. Anything else I can help you wiht let me know. Blessings, Bluerose

COBRA666's picture
COBRA666
Posts: 2418
Joined: May 2010

BLUEROSE,Did you ever check with your onc. about the progress that has been made in the last 20 years? Ever dig out those old reports to see what your diagnosis was 20 years ago? John

bluerose's picture
bluerose
Posts: 1089
Joined: Jul 2009

No I haven't dug out the info but I do remember the word 'follicular' but I think it was mixed cell follicular if that makes ssnse. I remember that. I will try and find that diangosis sheet today actually.

I really need to talk to an oncologist about progress and what the treatments are today. I know that there is alot of talks about Rituxin and I know is new, never had that mentioned during my treatments. Sounds like a real winner in the fight with this NHL. I was one of the first patients who had bone marrow transplants used for NHL, before my time they only used them for leukemia. I know that is what saved my life, the transplants.

I also have heard since I last wrote to you that they don't do total body radiation anymore or at least if they do they don't do it as often. Too much damage I would think, I know I have alot of damage from it alone.

A famous oncologist once told me that they apologize to long term survivors for all the side effects they have through treatments of the past that have left so much damage but he added that in truth cancer treatments are still in their infancy, a long way to go but they have come a long way in 20 years I can tell you. There is hope, big hope.

Will try and get that info for you later today.

Blessings,

Bluerose

1ladydiamond
Posts: 28
Joined: Oct 2012

Hi i was just diagnosed with follicular b cell lymphoma stage 4 it is a low grade slow moving cancer. I had a choice of watching and waiting but i discussed it with my doc and i started doing Rutixan in April of this year i was just diagnosed with it this April. I took it for each week until July then it has been each month July and August and Sept and Oct now i take it every 8 weeks i am so glad i did it. It has scaled back so much i am feeling so much better. Steroids is a major factor in it because it helps me from getting reactions which is not the normal with most people. Taking action instead of watching and waiting has added yrs to my life. They say 8-10 yrs is the life span but you can life far beyond that number. I feel and so does my doctor that taking action has added more yrs to me. My immune system is down of course especially after treatment so i have to be careful not to be around others that are sick with colds and virus. But overall i have a normal life tired alot but still enjoying life. So please don't be discouraged about this. Of all the cancers this is far the better one. So we are truly blessed my friend. If you have any more questions or would just like to talk you can reach me at first_ladydiamond on yahoo. Oh yes eventually it will come back to where it was but many yrs from now and yes it will keep happening and of course agressive treatment will happen but for now this is good. But please don't be discouraged
Patricia

natalie14's picture
natalie14
Posts: 36
Joined: Mar 2010

Bluerose,
Thankyou so very much for uplifting words!! What a wonderful success story!
Many more blessings to you!!
Natalie

bluerose's picture
bluerose
Posts: 1089
Joined: Jul 2009

Hope you and yours are well and happy. Thanks for the nice comments but like I said before if we don't share after these kinds of experiences then what's the point?

Take care.

Bluerose

JoanieP's picture
JoanieP
Posts: 573
Joined: Mar 2010

Thank you bluerose for the wonderful words. I was dx in Jan 2009 with follicular NHL and had a PET scan in June and Sept 09 that was clear. I am asking not to have one until next Sept if possible. I have my third rituxin next Wed. We are all so blessed to have been born after all the great cancer drugs were invented. God bless you for taking the time to give all of us encouragement .

bluerose's picture
bluerose
Posts: 1089
Joined: Jul 2009

Congrats on what sounds like successful treatments for you NHL. Why have you requested no other PET scans for a year or so? Just sick and tired of testing? I can understand that but you know well enough to listen to your doctors and if they feel the PETs should be more often you should rethink that perhaps but hey I get it, if I never had to see one more doctor or have one more test again it would be fine with me. After 20 years of it I'm a liitle sick of it but hey, I'm still here.

Hope all oontinues to go well for you. Blessings, Bluerose

JoanieP's picture
JoanieP
Posts: 573
Joined: Mar 2010

I read that the radiation from PET scans are not good if you can help it. I went to Moffit Cancer center in Tampa. Fl and a research Dr. in follicular NHL told me that PET scans were more for the patient. He said with blood tests, exams and symptom watching it was o.k to wait a while between them. You hear so many different things. I read on this site that you shouldn't take vitamins as cancer loves vitamins. I have never heard that. DO you have PET scans often? 20 years WOW. How are oyu doing. Do you take Rotuxin? I would love to hear your. story. I'm 62 and I teach 5th grade. It helps to keep my mind off scary things

bluerose's picture
bluerose
Posts: 1089
Joined: Jul 2009

Interesting, I had never heard that about vitamins and cancer or about the PET scans and radiation. Actually I have never had a PET scan ever. I don't know if they were even around during my treatments 20 and 18 years ago resp. They seem hesitant to use them and say that they use them only to follow cancer patients through treatments to see if they are responding to drugs but I know they are also using them in heart related matters as well.

I don't take Rotuxin, not sure what that is. My bone marrow transplant was autologus meaning they used my own marrow so maybe that is an antirejection drug, I don't know.

I had congestive heart failure during the isolation period of the transplant, nearly died right there, but I recovered but one of the cancer drugs damaged my heart they think and it has been a problem, I had to have an emergency pacemaker implanted because of the chronic and severe arythmias. I live near a world famous Heart Institute now and they have it calmed down.

I have what they feel are several long term effects from all the treatments so long ago including early osteoarthritis, nerve damage they think (having more tests for that in July), memory issues and some cognitive problems too which now they feel are related to radiation and chemo too - some chemo drugs not all. I have fibromyalgia as well and the fatigue is pretty hard to deal with. I haven't been able to work since I had the transplant, one side effect after another. Most are controlled with meds, I am on several for various things including morphine daily for my back problems.

But with it all I was able to be there for my kids as they grew up as they were just small when I went off for transplant, not knowing if I would be back since there is a chance of dieing during it (or was then), but next month my daughter is graduating from university and my son is into his new career so the treatments certainly worked. The docs consider me cured.

Thanks for asking about my story, hope it has helped you in realizing that today is a new day in treatment and today many live with cancer as chronic if not cureable. Yes there still are cancers that don't produce lasting results but hopefully we are close to finding a cure for them all.

Blessings, Bluerose

JoanieP's picture
JoanieP
Posts: 573
Joined: Mar 2010

I appreciate you writing and telling me about your journey. I met two people in church this morning who had NHL. It is certainly a common disease. I go Wed. for my Rituxin which is a maintanence drug. No real side effects for me. You had your disease during the time of chemo making you sick to your stomach I am sure. I know it is a blessing to see your children doing so well. I have two children and two grandchildren. Today's serman was on not wishing for your time on the job to be over etc. It was on cherishing each moment. I am a teacher and we have 40 more days this school year. I am trying to take that to heart this week . The kids are 11 year olds and very hormonal:) I try to keep my attitude good and not go back to that place of anxiety and paranoia . After you had your transplant did any part of the NHL come back? Sorry I am rambling. I blame it on blonde brain and chemo brain. Take care. Talk to you again I hope.

bluerose's picture
bluerose
Posts: 1089
Joined: Jul 2009

Hey Joanie,

Something struck me about your posting this time and that was when you said that you try and stay positive and not to go back into anxiety and paranoia.I understand what you are saying, we have to be positive, BUT you will feel anxious and worried about the cancer possibly returning that's normal and when you feel that way it's important to know that you aren't being paranoid - it's just a fact - we survivors will feel that once in awhile. The reason I am pointing this out is because I am having major anxiety issues right now and part of the reason is because I dealt with several traumas during cancer treatments and after and I did too much compartmentalizing - putting one trauma memory away in a box to deal with later as I battled something else til the boxes started to fall on me. We must priorize as patients of course but if we compartmentalize too much by ignorning our issues they can pile up and then we can really be in trouble.

I have found that the biggest help on this site is providing survivors with VALIDATION from other survivors where before we labelled ourselves with being paranoid and not being more positive about cancer survival. Yes positivity is important but more importantly is being nurturing to youself and recognizing that this is scarey, and we don't want it to come back and what if? I just talked with a trauma counsellor recently who I see who brought up that point and I found it incredibly important to share.

You asked about the NHL coming back after transplant and no it didn't. I had it first in 1989 and then it recurred in 1991 which is when I had the transplant and that was it - doctors consider it a cure. Of course that doesn't mean I can't be 'lucky' and get another cancer in the future what with all the radiation and chemo I had but I don't dwell on that but if I get some weird symptom which I did not long ago, I'm not stupid either and I get it checked out. If the doc's talk to me as if I am 'paranoid' about the possibility of recurrance at the appt to check the symptoms out - they get a lecture on how the question is totally appropriate for my medical history. Unless paranoia is interferring with your life as a survivor chances are you aren't being paranoid - you are just being smart and observant. Of course there is a limit to thinking that new symptoms could be another cancer but again just look at it and understand that this is normal to be afraid of recurrance and wonder about it but again unless this is interferring with how your life in a negative way don't worry about it or beat yourself up fof it. We do that way too much. Chances are that with many feelings we survivors feel, it is a common feeling amongst other suvivors and don't let anyone tell you otherwise. You know when a thought that becomes obsessive becomes obtrusive in your life, deal with that if it happens by running ti by a good grief/trauma/anxiety counbsellor (a psychologist who specializes in one or more of these areas is my personal choice).

Anywho hope this helps you a little.

Blessings, Bluerose

lvraider
Posts: 5
Joined: May 2010

I was teaching, but my short-term memory loss got the best of me. Just could not remember and come up with fast enough correct responses. I even started calling wrong colors, which was the end. I wish you well in your continuing efforts. I will comment, "NEVER, NEVER LET THEM PUSH YOUR MEDICATION TO GET DONE EARLY!" They did that to me three times on Rituxan & two of my Velcade (30-second push), and it may have caused the worsening of my memory problems.

bluerose's picture
bluerose
Posts: 1089
Joined: Jul 2009

What do you mean by 'pussing your medication'? Do you mean literally using the med plunger thingy to get it into a patient rather than using the drip bags? Heck almost all my chemo was 'pushed', some from bags but no idea which ones. Back 20 years ago when I was first diagnosed I didn't ask hardly any questions about what drugs and side effects - totally green then. I am not saying that they did anything wrong then at all but I just had that 'they know what they are doing and what they are using' blah blah blah and I just simply wanted to live so my attitude then was 'get it done'. I'm still here so some of that attitude worked but I had no idea how many late effects this would cause, all my treatments I mean. But hey, some get off with hardly a scratch so who knows, we are all different.

Have you seen a memory clinic/neuro-surgeon/neurologist about your cognitive and memory issues? I did and he said they are seeing lots of this with long term survivors. I guess they live and learn too. Sigh.

Something you said really struck home with me in your posting. You talked about you not being able to come up with fast enough quick responses. That's one of my big problems too. I just saw my counsellor yesterday and I brought that up as well. I feel like such a dud sometimes, used to be really quick with the answers and comebacks and now I feel like i just stare like a deer in headlights when someone says something to me, especially if it is unexpected - duh. lol. Oh well nothing to do but laugh at it and move on but secretly it's not funny.

Take care.
Bluerose

natalie14's picture
natalie14
Posts: 36
Joined: Mar 2010

Hi Bluerose,
I am currently undergoing ICE chemo for prep of an auto transplant late May/ early June. My kids are also very small...as your children were at the time also. It is so hard as they are confused too. I am so ready to cancel the transplant as the risks scare me! What was your outlook with a transplant? Were the doctors confident it would cure you? Is someone able to stay with you in isolation? Worried about all time away and pain..etc. Any advice would be so greatly appreciated!!! Natalie
When did you have your transplant and how did you feel when you went home?

bluerose's picture
bluerose
Posts: 1089
Joined: Jul 2009

As I think I mentioned before I am a 20 year survivor of NHL with the first diagnosis made in 1989 and at that time I had the regular CHOP chemo treatments and localized radiation to the abdomen and pelvis. They had taken the lump in my groin out and biopsied that and hence the diagnosis. They were sure they got it all. A year and a half later it came back in a lump under my left breast and that's when I opted for a bone marrow transplant as my thinking then was that the other two alternatives for treatments, for me made no sense. They were 'wait and see' which was not my kind of way of dealing with cancer and the other was to repeat the CHOP which hello, hadn't worked well the first time so the only thing left that they offered me was the bone marrow transplant. I wasn't crazy about the odds that I wouldn't make it through transplant but then again I had two young children and my thoughts were that without the transplant I wouldn't be around in 5 years for them so I felt I had to take the chance.

I prayed continuously for God to allow me to live to see my kids grow up and become independant and actually I had a healing take place in the hospital which sounds nutty to many people but it happened to me and I am no bible thumper I can tell you and was in no way even thinking of such an amazing intervention. But it happened to me and the cancer has never returned.

I was one of the first stem cell bone marrow transplant recipeints for NHL, before me they only did them for leukemia patients, well I don't know if I was the very first but in the first group that they tried the transplant for the NHL. Seems to have worked. lol.

It was no picnic back then. I had congestive heart failure in the early stages of treatment and nearly died from that but I didn't, had pneumonia about 3 times while in isolation too and the isolation was lonely but I had visitors and some could bring movies and the hospital provided tvs and vcrs then for the movies. Today I'm sure they do the same. The isolation away from my kids was hard but I was struggling the whole time in there so time didn't go slowly.

However having said all of that today might be a whole new day in transplants, autologus as I had as well, and I have never heard of ICE but I assume its the chemo before the transplant starts like my CHOP was. I don't know if the drugs are different too, I know that one of my drugs which was adriamycin did damage my heart and that is an issue I deal with today as well but you would have to go over possible side effects with your doctors ahead of time.

I think the bottomline is to look at your chances of survival without the transplant or by doing the 'wait and see' approach and then deciding from there for your own well being and that of your children. I can tell you that my prayers were always to allow me to live for my kids, til they became self supporting, and I do believe that this is the most powerful prayer there is, from a Mother for her children. Continue to pray that prayer and do it with the power of a Mother's love. I can tell you that that prayer does get through.

I was 39 when I went through transplant and I have friends who did better than me after transplant as they didn't have pre chemo and rads they docs think but you have to understand that everyone is different and I was treated many years ago, they might have much better drugs and treatments nowadays, I don't know. Ask your oncologists how autologus bone marrow transplants have changed in 18 years.

You know now that I think of it the CHOP wasn't before the transplant it was what I had when first diagnosed, sorry about that. Before the transplant I had a few shots of chemo before the transplant itself. Sorry about that. Memory issues are part of my side effects of the treatments, known to survivors and docs alike as chemo brain. I have many side effects as a long term survivor but the bottomline for me was that I did get to live to see my children grow up.

It's not an easy decision by any means but hopefully together with your oncologists who I hope you trust and have faith in you will make the right decision for you. Are you healthy other than the cancer?

All the best. Blessings, Bluerose

natalie14's picture
natalie14
Posts: 36
Joined: Mar 2010

Hi Bluerose,
Yes, I am healthy other then this. How long did you stay in the hospital and what was it like when you went home? Were you in pain, able to do some household things,etc? My children are 8 yrs, 4 yrs, and 2 1/2yrs old..little ones. I have gone through CHOP and everything sounds just like your story! What type of lymphoma did you have? And from what I understand, it was either wait and watch or transplant for you...were they pretty sure the transplant would cure you?? What would you say is the hardest side effect to live with?
Bluerose you are an inspiration!! My only reason for fighting so hard..besides faith..is for my children. I pray constantly that I can watch them growup and be a healthy mother to them. I wonder why some children have to watch their parent/s go through something so evil, but it isn't for us to figure out. Please keep in touch!!! Blessings!!! Natalie

bluerose's picture
bluerose
Posts: 1089
Joined: Jul 2009

I was in isolation for almost 2 months due to the congestive heart failure so was in longer. I shouldn't have really been let out but they needed the isolation room as transplants were piling up and I remember the nurses being very worried about me going home as they knew I wasnt ready to go yet. I left the hospital in a wheelchair and the visting nurse was right at the door of my home after I had arrived home and just gotten into bed. I felt pretty bad. She took one look at me and was very worried at my condition. I truly don't know how I made it through it all I can tell you.

I was in bed for a few weeks and then on the couch for a few weeks more and I had alot of problems with respiratory issues (from the pneumonias I guess) so recouperation wasn't easy for me but again everyone is different. I had to have housekeepers in for quite a while I couldn't do anything and was very dizzy and unwell for quite sometime. I had to have someone with me to go to the bathroom and shower and such.

I had non hodgkins lymphoma and I really forget the exact type, sorry it was a long time ago. I do have the biopsy papers and can look it up if you would like to know the exact kind but as I said even if two people have the same type they can react differently.

The choices they gave me after I had on recurrance were: Do the CHOP thing again and localized radiation as I had the first time or the transplant or wait and see.

The doctors would never say that they were sure anything would cure me but they of course hoped for the best.

The hardest side effect for me has been the heart damage due to adriamycin. It produced a severe arythmia (atrial fibrulation) which lots of people have without this drug damage and live with but mine can be quite severe sometimes and I feel faint and have had to be rushed to hospital by ambulance many times and it got me admitted to a world famous heart institute I am lucky to have in my city. I had to have an emergency pacemaker implanted about 7 years ago because of the severe arythmia. I am on several heart medications and one day I'm sure I will need surgery to try and correct the problem although sometimes that surgery in itself can be dangerous. The fatigue I continue to have is also very debillitating and I am in chronic pain in joints and my back from nerve damage they think and also from the early arthritis that was no doubt due to all the radiation I had. The combination of all my side effects is difficult at times but some of the medical issues I deal with could also be from other medical problems and not transplant as well - hard to tell for sure but I had none of this before transplant but of course I am aging as well - to add insult to injury. lol.

I know you are worried about how your kids will handle all of this but I found that what they say is true, kids are very resilient and if you have the support of family and friends that will be there for them when you are away I'm sure they will get through. My kids were affected I'm sure along the way and missed me but I did little things to help them through like calling them from isolation every night to say goodnight and they would send me things they made in school and before I went in to the hospital I made up 3o x 2 little envelopes of a little message from me and a little treat (a sticker or candy) and they could open it after they ate their dinners. I had to do more in the hospital for my husband to take back with him as I was in longer than I thought I would be. You might consider doing something like that too before you go in if you decide to go ahead.

I answered your questions honestly but I hope you are not discouraged by my experiences because truly everyone responds differently to any kind of treatment so no two survivors are the same. I had a rough time but you might not and like I said my treatments were years ago and some of the drugs might have changed and radiation could be different as well. I know that anti nausea drugs for instance changed dramatically from when I had my first diagnosis and treatment to when the transplant was done.

Transplants are rough but many people have a shorter recovery time and many go back to work not too long afterwards. I pray you are one of those people and this will soon be over, cancer will be behind you and you can move on with your life and family.

Take good care of you and yours.

Hugs,
Bluerose

1ladydiamond
Posts: 28
Joined: Oct 2012

Hi BlueRose your story is encouraging i was diagnosed in April of this year with stage 4 follicular lymphoma. Yeah no waiting and watching with me. I started Rutixan and now i have scaled back still stage 4 I asked opinions about the cell therapy and was told that right now it wouldn't be best for me. I had a option of waiting and watching not for me i wanted to start treatment asap and i believe by making that choice it has increased my yrs of living/ I called the cancer treatment of America and talked to a researcher and he said it is a risky chance but i know after hearing you speak of your experience that i will down the road take a chance on that. I have lumps also but my doctor says nothing to worry about this is coming from a man that thought i was just in stage 1 or 2 and i fought to get a bone marrow biop and it turned out to be 4. I also read and was told by my doc 8-10 yrs life but with out that cell therapy i think this is correct.
Doing research on it this is what really helped you and i am so happy that you are doing great. God is a amazing God i am not bible thump er but my faith is strong and i believe of all the cancers i am glad i have this one instead of the others. There is so much research happening in this area. I have watched and listened to the conferences and speeches online from some of the leading researchers in this area and Oh Gosh each day is closer to a cure. Thank you for sharing you story it has helped me realize that this is what i want in the future. Wishing you nothing but love and happiness always

m-star's picture
m-star
Posts: 444
Joined: Apr 2010

Hi Rose,

It's lovely to hear words like your and so uplifting to those following in our unfortunate footsteps.
I wish i'd have been able to speak to someone who'd survived when i was dx nearly 20 yrs ago.It would have been a huge boost to my morale.

This is why raising funds for cancer reserach is essential. Without it,i'm pretty sure alot of us would not be here right now.

hugs,

Kay

xoxo

bluerose's picture
bluerose
Posts: 1089
Joined: Jul 2009

I so agree, fundraising for cancer research is huge and neither you or I would be here 20 years later with all the new techniques and treatments that weren't available even 5 years before our diagnosis I bet. It's nice though to today see how much more support cancer suvivors have with sites like this and because some of us vocal long terms survivors have spoken out and reported all we have over the last many years physicians have seen patterns of similarity and so today there are so many more validating support groups, programs and new techniques for survivors. It's great to see.

See you soon in the room. Take good care. Bluerose

bluerose's picture
bluerose
Posts: 1089
Joined: Jul 2009

Oh ya me too, I wish I had this site when I was first diagnosed 20 years ago too, sure would have been nice to have that support, encouragement and validation.

Absolutely fundraising for cancer research is essential and events such as the upcoming Relay for LIfe is a shining example.

Take care Kay. Hugs, Bluerose

COBRA666's picture
COBRA666
Posts: 2418
Joined: May 2010

Bluerose,
How have you been? I have not posted on here in quite a while. I have been on another site called "CANCER SURVIVORS NETWORK". There are some great people on there and are just like family. I have gone thru all my r-cvp and now ready for the Rituxin maint. Went into remission on Sept. 28th 2010 and starting to get all my strenght back. It is taking time though. Just wanted to check in with you since this is the first place I ever posted. Wishing you well. John(FNHL-1-4A-5/10)

bluerose's picture
bluerose
Posts: 1089
Joined: Jul 2009

This is CSN. lol. A little chemobrain there John? lol. Do you mean ACS site? lol. I used to post there too if that is what you meant.

I just updated myself to you under another heading, said I would look up those first diagnosis reports today. My update on my current situtation is under my post here for Joanie if you want to have a read of that.

I see you just updated me here on how you are doing, sounds like you are on the way to recovery but yup it sure does take awhile, step at a time right?

Glad to hear from you John. I have been posting under other topics here, mostly Emotional Support and visit the room once in awhile.

I wish you continued success John, take care.

Blessings,

Bluerose

JoanieP's picture
JoanieP
Posts: 573
Joined: Mar 2010

Last night I was thinking that I hadn't seen Bluerose, Catwink. Natalie, Beth , Mary and Leslie on the discussion for so long. You all were such important people to me during my
diagnosis and chemo. You are all very special people. Please write and let me know how you are. I think of all of you and need an update Joanie

bluerose's picture
bluerose
Posts: 1089
Joined: Jul 2009

I haven't been posting on this board in a long time because I don't get alerts from CSN in email that postings of mine have a response. I think it's because I had to change my email address and maybe that's why I don't get them or maybe they stopped doing that, don't know. So it's hard to keep up with posts I have made.

Thanks for asking after me though.

Well it's been up and down really. I had a miracle happen though about 9 months ago now I guess it's been. The afibrulation I had with my heart just up and stopped. I have no idea what the heck happened but my cardiologist said it does happen now and then and they don't know why. I mean this arythmia had me almost fainting many times over the last 10 years or more, had me in ambulances many many times and resulted in an emergency pacemaker being put in about 8 years ago then poof its just gone? It was a wow moment and has changed things for me dramatically. Now I can actually plan to do things, still have to cancel sometimes for other side effect reasons but I can tell you that when your heart is acting up, you are drastically affected and can't function. So that's the good news.

I am being followed for gynecalogical issues, cysts found stuff like that but I have the best gyne/onc here so am confidant he is watching carefully. I get 6 month pelvic ultrasounds to see what's going on but I think I will need a D and C at some point to check to make sure they are just cysts and nothing worse.

Same old same old, more tests, sometimes a finding - more tests then the wait and sees. It never ends does it? Anywho that's pretty much the latest at this end.

How have you been?

Blessings,

Bluerose

P.S. I have been posted more regularly in the Emotional Issues forums and sometimes Long Term Survivors and spirituality sections.

dixiegirl's picture
dixiegirl
Posts: 1043
Joined: Apr 2006

I'm here lurking in the background honey. New puppy Sam is taking up a LOT of time and energy, but everyone here is never outside my heart.

I went for rituxan yesterday and I'm ok. Doc is referring me to a Lymphadema clinic due to some swelling in my armpit. At least he couldn't feel any nodes. I don't know what to think of this side effect since it's been a year since I had my biopsy. It boggles my mind.

I will try to post more often.

Take care,
beth

JoanieP's picture
JoanieP
Posts: 573
Joined: Mar 2010

Hi Beth, Good to see you post. I had my sixth rituxin on Wed the 5th. My only side effect which is really horrible is blockage. Yesterday it took two enemas. Gross!!! I have been married 40 years and I tell my husband what a treasure he is. Who would have have thought it would come to this. He acts like it's no problem to give me these but it's not what I imagined 40 years ago:). Do you ever hear anything from catwink and Natalie? Let me know about the swelling. I waited a year for a PET scan . I hate the radiation.

JoanieP's picture
JoanieP
Posts: 573
Joined: Mar 2010

I love to read your comments. You are an inspiration to all of us. That's wonderful about the afibulation . Sounds like the gyn has the right plan going. I am feeling great except for my Riuxin blockage I get after the procedure. That was yesterday and I am better now. I hate that my great husband has to administer. Not the romantice dream I had of us getting old together in 1970:):)

bluerose's picture
bluerose
Posts: 1089
Joined: Jul 2009

Ya that whole 'live happily ever after'thing we all had when we got married took a detour when cancer came calling for sure but sounds like your marriage sounds strong and remember when you are feeling badly about your husband having to administer - you would do the same for him if situations were reversed and I'm sure that it actually is helping him feel as if he is in turn helping you through giving you the meds. Oftentimes caregivers feel so useless in helping their loved ones, this way he is helping so think of it that way. I'm sure he does.

Glad to hear that basically you are doing okay. Hope that continues.

Take good care.

Blessings,
Bluerose

bluerose's picture
bluerose
Posts: 1089
Joined: Jul 2009

Joanie can you tell me about this Riuxin? I have seen it a few times mentioned on the boards and I was wondering if you could fill me in on this and when it is used? It wasn't around as far as I know when I had my transplant.

Thanks

Bluerose

dixiegirl's picture
dixiegirl
Posts: 1043
Joined: Apr 2006

Bluerose,

Rituxan is a monoclonal antibody that attaches to specific CD20 cancer cells like a marker to help our immune system know what cells to kill. It's a mouse antibody and has been around for awhile, but not when you had your treatments. It's getting very good results and sometimes is used as a mainline treatment.

With my last relapse I did Rituxan once a week for 4 weeks then maintenance once every two months. I am doing the maintenance for 2 years which is fairly common regime.

It's pretty side effect free, at least for me.

Thanks,
Beth

bluerose's picture
bluerose
Posts: 1089
Joined: Jul 2009

Sounds like great progress with Rituxan since my treatments. Very interesting. Fabulous to know that maybe others won't have to go through all the side effects I have resulting from treatments of 20 years ago.

Hope you continue on your road to recovery without side effects of any kind.

Blessings,
Bluerose

CountryGal7557
Posts: 165
Joined: Feb 2011

I was diagnosed March 2010,Stage 4a Follicular B-cell NHL indolent, coming up on my one year anniversary. Took 2-day treatment of Rituxan + Treanda for 4 months, Pet scan came back 'no activity' - clear scan in July 2010, 16 days before my daughter's wedding! then finished up with 4 weekly treatments in August. I am cancer free and my onc will be monitoring my progress thru blood draws. he said he's not a fan of too s tmany PET scans, which we were relieved to hear.

I blogged my Journey @ http://lifeisgood2010.wordpress.com/ because I could not find a support group anywhere, this site didn't even show up when I googled for information. so I started my own journey in hopes to help others. I am so glad to finally have found all of you, better late, then never, as it's great to hear encouraging words and to hear success of others. I am now experiencing the aches and pains in joints - mostly ankles and have read on this site, that it's all a part of the late affects after chemo, and to take Aleve or Tylonol - is there nothing that can be done? I work at Swanson Health Products and found a Joint supplement that I am going to try for two weeks and see if that helps.

Life is still pretty darn Good!
Janelle
Stage 4a Follicular B-cell NHL indolent (I've seen alot of abreviations on how to write the dx, but I'm not familiar with how it all yet.)

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