Non Hodgkins Lymphoma Success

bluerose
bluerose Member Posts: 1,104
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
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Comments

  • catwink22
    catwink22 Member Posts: 281
    Thank you
    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
  • winthefight
    winthefight Member Posts: 162
    Blueroses
    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.
  • merrywinner
    merrywinner Member Posts: 626
    Thank you!
    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
    bluerose Member Posts: 1,104

    Blueroses
    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.

    Where have you been Win?
    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
  • bluerose
    bluerose Member Posts: 1,104

    Thank you!
    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

    If we can't share then what was the point?
    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
  • bluerose
    bluerose Member Posts: 1,104
    catwink22 said:

    Thank you
    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

    Hello Cat
    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
  • curecancer
    curecancer Member Posts: 8
    bluerose said:

    If we can't share then what was the point?
    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

    Now thats a blue rose! Instead of that blueangel...hehehe
    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!!!
  • Linda56
    Linda56 Member Posts: 3
    catwink22 said:

    Thank you
    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

    Hi! I am a new patient and
    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
  • bluerose
    bluerose Member Posts: 1,104

    Now thats a blue rose! Instead of that blueangel...hehehe
    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!!!

    Hey Patty
    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.
  • catwink22
    catwink22 Member Posts: 281
    Linda56 said:

    Hi! I am a new patient and
    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

    Rituxin
    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
  • natalie14
    natalie14 Member Posts: 36
    Bluerose,
    Thankyou so very

    Bluerose,
    Thankyou so very much for uplifting words!! What a wonderful success story!
    Many more blessings to you!!
    Natalie
  • bluerose
    bluerose Member Posts: 1,104
    natalie14 said:

    Bluerose,
    Thankyou so very

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

    Hi Natalie
    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
    JoanieP Member Posts: 573
    bluerose said:

    Hi Natalie
    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

    Thanks
    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 .
  • m-star
    m-star Member Posts: 441
    bluerose said:

    Hi Natalie
    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

    Hi Rose,
    It's lovely to hear

    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
    bluerose Member Posts: 1,104
    m-star said:

    Hi Rose,
    It's lovely to hear

    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

    Hey Kay
    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
    bluerose Member Posts: 1,104
    JoanieP said:

    Thanks
    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 .

    Hey Joanie
    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
    JoanieP Member Posts: 573
    bluerose said:

    Hey Joanie
    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

    Thanks bluerose
    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
    bluerose Member Posts: 1,104
    JoanieP said:

    Thanks bluerose
    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

    Hi Joanie
    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
    JoanieP Member Posts: 573
    bluerose said:

    Hi Joanie
    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

    Thanks Bluerose
    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
    bluerose Member Posts: 1,104
    JoanieP said:

    Thanks Bluerose
    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.

    Positivity is great but being honest with yourself comes first
    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