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Happy to sign up with Cancer Survivors Network Hodgkins

roryhorsburgh's picture
roryhorsburgh
Posts: 16
Joined: Jul 2012

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.

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

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

.

roryhorsburgh's picture
roryhorsburgh
Posts: 16
Joined: Jul 2012

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.

jimwins's picture
jimwins
Posts: 2025
Joined: Aug 2011

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. :)

roryhorsburgh's picture
roryhorsburgh
Posts: 16
Joined: Jul 2012

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.

allmost60's picture
allmost60
Posts: 3167
Joined: Jul 2010

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)

roryhorsburgh's picture
roryhorsburgh
Posts: 16
Joined: Jul 2012

Thank you. I will pray and send you positivity. I wish you the best and I will keep my eye on your posts.

anliperez915's picture
anliperez915
Posts: 751
Joined: Sep 2011

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's picture
cathyp
Posts: 366
Joined: Dec 2009

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's picture
roryhorsburgh
Posts: 16
Joined: Jul 2012

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's picture
roryhorsburgh
Posts: 16
Joined: Jul 2012

Thank you Liz. I hope and think you can get to remission. God bless your and your family

DadysGirl
Posts: 318
Joined: Aug 2011

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's picture
forme
Posts: 1158
Joined: Aug 2010

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's picture
diazr1
Posts: 101
Joined: Mar 2012

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

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's picture
diazr1
Posts: 101
Joined: Mar 2012

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

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

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's picture
roryhorsburgh
Posts: 16
Joined: Jul 2012

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?

Aaron's picture
Aaron
Posts: 238
Joined: Jun 2012

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

If Franz Kafka had lymphoma, it would be NLPHL for sure...

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