Happy to sign up with Cancer Survivors Network Hodgkins

roryhorsburgh
roryhorsburgh Member Posts: 16
I was diagnosed with Hodgkins Lymphoma in March 2011. Just signed up today. I noticed just looking at what some people posted. It has made me break out my paperwork and get a little more involved in my disease. Although I am not a survivor yet I have just achieved complete remission (CR). Thank God. I still have to get a Stem Cell transplant. I have just received Treanda yesterday and have another infusion today. Its been a long road. 4 different chemos. 2 other treatments. I am a happy camper. Let me know if you have had Hodgkins or have Hodgkins. Or if you just want to say whatever.

God bless you all and all our friends and families.

Comments

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,736 Member
    Welcome !

    Rory,

    Well, this site is a good place to "learn more," as you are wanting to do. Just about every lymphomia under the sun here, and cases from "easy" to very difficult. I sure a dozen or so will chime in to greet you soon...

    max

    .
  • jimwins
    jimwins Member Posts: 2,107
    Welcome
    Hi Rory and welcome. You'll find lots of caring and
    supportive folks here. I had non hodgkins lymphoma
    (Diffuse Large B Cell) and completed chemo 10/11 and am
    currently in remission (Thank God).

    It would help if you complete the "about me" section of your profile
    as members here can reference that quickly and get an idea of
    what you've been through and are going through in one place.

    There will be others who will chime in soon and those who
    have had hodgkins lymphoma. Again, welcome to the site.

    Hugs and positive thoughts,

    Jim
    DX: DLBL 4/2011, Chemo completed 10/2011, currently in remission. :)
  • allmost60
    allmost60 Member Posts: 3,178
    Welcome Rory..
    Hi Rory,
    So glad you made it to complete remission and want to wish you the best with your Stem Cell transplant. We have quite a few folks that have gone through a SCT and will be more than happy to share their experience with you. I have not had it done, so can't help much other than with support. I have Follicular NHL-stage3-grade2-typeA-Dx in June of 2010). I did 6 rounds of chemo...CVP-R and now doing the 2 year maint with Rituxan. I'll be finished with the Rituxan in Feb 2013 and then will start the "watch and wait" process. So far, so good for me and I hope to have a few more good years before having to deal with a recurrance(knock on wood), as Follicular NHL more often than not has a tendency to come back. Will just cross that bridge when I come to it. Please come back and know someone is always around to help. Welcome to the group...Best wishes...Sue (age 61)
  • anliperez915
    anliperez915 Member Posts: 770
    Hi Rory
    Hi Rory,
    Welcome to the group, I'm glad that you finally reached CR!!! Hope you stay like that for a long time. My diagnosis in Splenic Marginal Zone NHL stage 4, I have been lucky so far; only had Rituxan treatment once a week for 4 weeks every six months. I've had one round in Feb. and will start another round the 19th of this month. I have not reached Remission but hopefully will reach it soon! Sending you positive thoughts, take care.

    Sincerely,
    Liz
  • cathyp
    cathyp Member Posts: 376 Member

    Hi Rory
    Hi Rory,
    Welcome to the group, I'm glad that you finally reached CR!!! Hope you stay like that for a long time. My diagnosis in Splenic Marginal Zone NHL stage 4, I have been lucky so far; only had Rituxan treatment once a week for 4 weeks every six months. I've had one round in Feb. and will start another round the 19th of this month. I have not reached Remission but hopefully will reach it soon! Sending you positive thoughts, take care.

    Sincerely,
    Liz

    Hodgkins Lymphoma Survivor too
    Hi Rory,

    Thought it may be helpful to tell you that I am a (almost) 23 year survivor of Hodgkin's Lymphoma or Hodgkins Disease like they used to say in the "old days"!
    Sending you best wishes as you undertake yor SCT and hope you have continued positive outcomes.
    Cathy
    HD 1989 - RADS
    HD 1994 - ABVD
    IDC 2007 - DBL MX
  • roryhorsburgh
    roryhorsburgh Member Posts: 16
    cathyp said:

    Hodgkins Lymphoma Survivor too
    Hi Rory,

    Thought it may be helpful to tell you that I am a (almost) 23 year survivor of Hodgkin's Lymphoma or Hodgkins Disease like they used to say in the "old days"!
    Sending you best wishes as you undertake yor SCT and hope you have continued positive outcomes.
    Cathy
    HD 1989 - RADS
    HD 1994 - ABVD
    IDC 2007 - DBL MX

    Hoping to be a Survivor as well
    Thank you Cathy. Your reply is helpful to me. God bless you and your family. Positive outcome is what I need to see. Congratulations and thank you.
  • roryhorsburgh
    roryhorsburgh Member Posts: 16

    Hi Rory
    Hi Rory,
    Welcome to the group, I'm glad that you finally reached CR!!! Hope you stay like that for a long time. My diagnosis in Splenic Marginal Zone NHL stage 4, I have been lucky so far; only had Rituxan treatment once a week for 4 weeks every six months. I've had one round in Feb. and will start another round the 19th of this month. I have not reached Remission but hopefully will reach it soon! Sending you positive thoughts, take care.

    Sincerely,
    Liz

    Hi Liz
    Thank you Liz. I hope and think you can get to remission. God bless your and your family
  • roryhorsburgh
    roryhorsburgh Member Posts: 16
    allmost60 said:

    Welcome Rory..
    Hi Rory,
    So glad you made it to complete remission and want to wish you the best with your Stem Cell transplant. We have quite a few folks that have gone through a SCT and will be more than happy to share their experience with you. I have not had it done, so can't help much other than with support. I have Follicular NHL-stage3-grade2-typeA-Dx in June of 2010). I did 6 rounds of chemo...CVP-R and now doing the 2 year maint with Rituxan. I'll be finished with the Rituxan in Feb 2013 and then will start the "watch and wait" process. So far, so good for me and I hope to have a few more good years before having to deal with a recurrance(knock on wood), as Follicular NHL more often than not has a tendency to come back. Will just cross that bridge when I come to it. Please come back and know someone is always around to help. Welcome to the group...Best wishes...Sue (age 61)

    Thank you
    Thank you. I will pray and send you positivity. I wish you the best and I will keep my eye on your posts.
  • roryhorsburgh
    roryhorsburgh Member Posts: 16
    jimwins said:

    Welcome
    Hi Rory and welcome. You'll find lots of caring and
    supportive folks here. I had non hodgkins lymphoma
    (Diffuse Large B Cell) and completed chemo 10/11 and am
    currently in remission (Thank God).

    It would help if you complete the "about me" section of your profile
    as members here can reference that quickly and get an idea of
    what you've been through and are going through in one place.

    There will be others who will chime in soon and those who
    have had hodgkins lymphoma. Again, welcome to the site.

    Hugs and positive thoughts,

    Jim
    DX: DLBL 4/2011, Chemo completed 10/2011, currently in remission. :)

    Love to hear the word remission.
    I took your advice and filled out my about me page. Its starting to feel as though a truck has ran me over. Had Treanda thurs and fri. Recovering today. I am in remission but they must give me this last dose of chemo to make sure disease don't grow before transplant. Thank you Jim and Congratulations with remission. Cancer is a tuff road. With emotions flowing. It is so good to hear about remission.
  • roryhorsburgh
    roryhorsburgh Member Posts: 16

    Welcome !

    Rory,

    Well, this site is a good place to "learn more," as you are wanting to do. Just about every lymphomia under the sun here, and cases from "easy" to very difficult. I sure a dozen or so will chime in to greet you soon...

    max

    .

    Former Hodgkins. Love your name.
    Thank you Max. I am learning more. And finding much inspiration on this site. I never quite knew if I would hear the word remission. To hear my cancer was sent into remission was huge. Talk to you soon. I am gonna try to keep up with site while going through STC.
  • DadysGirl
    DadysGirl Member Posts: 346
    Rory, will write you more am
    Rory, will write you more am in hospital with Dad and pretty tired... I hope you will get a complete cure with the sct. I hope my dad and everyone else will too. All I can say is pray pray pray and expect everything from God and get lots of prayers too... I can't believe how nice and caring everyone is at this forum... They truly seem concerned and everyone is routing for each other here... Mike that just got out of sct who most likely is feeling pretty drained himself writing everyday asking about my Dad not a single liner either... Sct is not an easy process so I'm giving him as an example, everyone is there for others here regardless of the shape they are in... Lots of prayers, take care and congratulations on your baby girl... Wishing you and loved ones nothing but the best...
    Ps I'd love to here about your Mexico treatment etc...
  • forme
    forme Member Posts: 1,161 Member
    Welcome
    Hi roryhorsburg

    I too just wanted to add my welcome to you. So many new folks joining our group lately. I've had trouble keeping up with all the new posts.

    Anyway, you have found a great group of friends who will be there for you whenever you have need.

    Thinking of you
    Lisha
  • diazr1
    diazr1 Member Posts: 101
    forme said:

    Welcome
    Hi roryhorsburg

    I too just wanted to add my welcome to you. So many new folks joining our group lately. I've had trouble keeping up with all the new posts.

    Anyway, you have found a great group of friends who will be there for you whenever you have need.

    Thinking of you
    Lisha

    I currently have Hodgkins
    I currently have Hodgkins Lymphoma. Was on a clinical study but had an infiltration in my lungs so it's stopped for now but hope to get cleared to go back on. You are the first I see in a while that just has HL. EVERYONE here has NHL. I am glad u are in CR. HOPE TO BE THERE SOON been battling since 2009
  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,736 Member
    diazr1 said:

    I currently have Hodgkins
    I currently have Hodgkins Lymphoma. Was on a clinical study but had an infiltration in my lungs so it's stopped for now but hope to get cleared to go back on. You are the first I see in a while that just has HL. EVERYONE here has NHL. I am glad u are in CR. HOPE TO BE THERE SOON been battling since 2009

    NHL
    Diazr1,

    About 75% of all new lymphomas are NHL. There are some of us HL folks here as well, however.

    Welcome aboard from a sub sailor,

    Max
  • diazr1
    diazr1 Member Posts: 101

    NHL
    Diazr1,

    About 75% of all new lymphomas are NHL. There are some of us HL folks here as well, however.

    Welcome aboard from a sub sailor,

    Max

    What's been tuff for me is
    What's been tuff for me is now after 3-4 years I'm dealing with chemo side effects was always a "superman"
  • Aaron
    Aaron Member Posts: 237

    NHL
    Diazr1,

    About 75% of all new lymphomas are NHL. There are some of us HL folks here as well, however.

    Welcome aboard from a sub sailor,

    Max

    I don't know max, a massive
    I don't know max, a massive collection of the greatest medical minds in the lymphoma world can't seem to agree weather were HL or NHL.
  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,736 Member
    Aaron said:

    I don't know max, a massive
    I don't know max, a massive collection of the greatest medical minds in the lymphoma world can't seem to agree weather were HL or NHL.

    A Rose by any other Name...

    If Franz Kafka had lymphoma, it would be NLPHL for sure...
  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,736 Member
    diazr1 said:

    What's been tuff for me is
    What's been tuff for me is now after 3-4 years I'm dealing with chemo side effects was always a "superman"

    Greeting

    Diazr1,

    Love that Camaro. My cousin had a 1967, yellow, with a black convertable top back in the day. 327 V-8. I have no idea what it would be worth now. My brother had a 1968 Shelby GT-500 Mustang. At the time, I drove a Vega. I've never had a hot car, and my "mid-life crisis" is over (I'm 56 now). Oh well.

    I have been in CR three years now, but I too have a good many side effects. I have coughing spells which I cannot control, which sometimes run for hours, or even days. Also, continuous shortness of breath, but not as bad as it used to be. During treatment, I had to lie in bed often, and panted like a dog at times, just to get oxygen.

    I'm not much to be around during those coughing spells, and the wife even has me sleep on the couch, so she can get a little sleep. I have neuropathy pretty significantly as well (numb hands and feet). Reportedly, none of my side-effects are treatable.

    I have always said, however: "I'd rather have side-effects than cancer."

    Bless your treatment. I give thanks daily for what I received.

    max

    .
  • roryhorsburgh
    roryhorsburgh Member Posts: 16
    diazr1 said:

    What's been tuff for me is
    What's been tuff for me is now after 3-4 years I'm dealing with chemo side effects was always a "superman"

    Hey there Diaz. I have had chemo about a year and a half. I hope they go away for you. The biggest side effect for me for now and hopefully forever is numbness. My feet have never truly regained their sensations after a chemo called Eshap. Its really annoying and awkward sometimes when trying to be nimble. Now I am recovering from Treanda that I had last Thurs and Friday. I am going to get a SCT starting on the 24th of July. They tell me food will not taste good for 3 months after I have the treatment. I hope your side effects simmer away. What excatly are they?