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SGN-35

Denise3
Posts: 14
Joined: Aug 2008

I waa originally diagnosed with HL in 2005. Took long round of ABVD, and radiation. My HL went dorment for several weeks. Pet showed return. I went into hospital for salvage chemo. Then went to UAB for more salvage chemo then under went an autologous stem cell transplant. Almost made 1 year. The result is that I am in the 1 percent that the HL can hide and reject the chemo. Now Iam told my only option is to begin comfort care, and try chemo already taken such as ABVD and ESHAP until the onco deems it useless and then we call in Hospice. Or I can start a clinical trial called SGN-35 that is not FDA approved yet. I am the perfect candidate so they say. Does anyone know anything at all about the trial of which I speak, or any other advice would be most appreciated. I am 44, just married for almost 6 years have 3 children, and 3 grandchildren, and although my faith in God is great, and everything is his will and to his glory I am not ready to go home.

hodgkoid2003's picture
hodgkoid2003
Posts: 96
Joined: Apr 2009

I don't personally know anything about the trial that you are mentioning. Nor do I have any experience with stem cell transplants. But, just curious, what do you mean by "hiding"? Can they not get your HD into remission? Or is it in remission, and there is a concern that it is likely to come back? What stage of HD did/do you have? Do you know what type (nodular sclerosing, mixed cellularity, lymphocyte predominent, etc.)?

To be honest, I won't, can't, and shouldn't give you medical advice. But there is definitely nothing wrong with a totally independent second opinion. What hospital is UAB? There are plenty that have specialties in Hodgkin's.

Paul E. (Hodgkoid2003)

kathyh007
Posts: 4
Joined: Jun 2009

Clinical trials for SGN 35:
http://clinicaltrials.gov/ct2/show/NCT00866047
http://clinicaltrials.gov/ct2/show/NCT00649584

Seattle Genetics is the bio-firm developing the treatment. You can read about their presentation to the American Society of Clinical Oncology 2009 Annual Meeting on June 1st at this link:
http://www.businesswire.com/portal/site/google/?ndmViewId=news_view&newsId=20090514006285&newsLang=en

"At the time of abstract submission, preliminary data were available for 17 patients from this dose-escalation trial, including 13 with Hodgkin lymphoma and four with systemic anaplastic large cell lymphoma. SGN-35 dose levels ranged from 0.4 to 1.0 milligrams per kilogram. Out of 15 patients evaluable for response, seven achieved a complete response and one had a partial response. All of the complete responses were at the two highest dose levels. Stable disease was observed in five patients and two patients had progressive disease. SGN-35 was generally well-tolerated. The most common related adverse events were Grade 1 and 2 rash, nausea and peripheral neuropathy.
Seattle Genetics is advancing SGN-35 in an ongoing pivotal trial for relapsed and refractory Hodgkin lymphoma and a planned phase II trial for systemic anaplastic large cell lymphoma. The pivotal trial is being conducted under a Special Protocol Assessment (SPA) with the U.S. Food and Drug Administration (FDA). SGN-35 has also received Fast Track designation from the FDA for Hodgkin lymphoma."

This looks to be an exciting break through! You should definitely look into getting onto one of the clinical trials. Requirements are Hodgkins that relapses and accepts autologous stem cell transplant patients with relapse. I have ALCL and believe in Jesus. Like you, I'm not sure it's time for me to go home yet. Blessings!

Denise3
Posts: 14
Joined: Aug 2008

Thank you for the info. I do hear good things about this trial, and they say I am at this time a perfect candidate. They also say that it's likely my only real hope. If it puts me into remission for at least a year them they will do a donor transplant. If I survive that I have a slim chance. I hope things go well for you whatever your situation. As with everyone else I meet or conversate with I will put you on my prayer list. Thanks. Blessings to you!

carrie_b
Posts: 5
Joined: Aug 2009

I am interested in hearing about anyone else with ALCL...wondering how you are doing? As I said in a previous post, I was diagnosed with stage 1 ALCL ALK-neg in Jan. 2009 and completed CHOEP-21 in April along with radiation in June. Was said to have been in remission but earlier this month (aug. 2009), felt more lumps in the opposite armpit (which would make me at least a stage II now) and am awaiting latest pet scan results. I am pretty sure there will be a stem cell transplant in my future, but am wondering if there is anyone out there going thru similiar circumstances? God is the author of my life and whatever my future holds, I know it holds GOOD things because Heaven is my ultimate home, but while I wait, it is valuable to hear from other survivors!

kathyh007
Posts: 4
Joined: Jun 2009

Hi Carrie_b!
I was diagnosed with ALCL ALK- in March 2009. By June I was in remission after 6 rounds of CHOP. In October I started getting abdominal pain again and by November enlarged lymph nodes were showing up on CT Scan.

With the help of my sister I was able to get into the SGN 35 phase II trial. I've had 1 treatment, but already I'm feeling better. By the time I got into the trial I was so weak I could barely get in and out of a wheel chair. The next morning after the infusion I got out of bed, took the hotel elevator downstairs and ordered my own breakfast. My family was astonished - I was recovering so quickly, a miracle.

I've had no side effects thus far. I get my second treatment in another week. The other ALCL patient at Seattle Cancer Care Alliance went into remission following the second infusion. I'm so excited. I'll let you know what happens. However, what has kept me going is the love of Christ as shown through my family. Their support has REALLY helped.

Blessings, kathyh007

pine soul
Posts: 1
Joined: Jun 2009

There are several people with Hodgkin's on the Lymphoma board at webmagic who are on the SGN 35 trial getting great results. I encourage you to go to the boards and ask your question there. Just copy and paste into your browser the link below.

http://forums.lymphoma.com/forumdisplay.php?f=6

NeekieNoo
Posts: 1
Joined: Jul 2009

I happened to stumble across your post and wanted to let you know that I have been undergoing treatment with SGN-35 since January. I have the same experience as you, I have done 4 chemo regimens (including the autologous stem cell transplant with high dose chemo therapy) which like you had a short lived success. I am now nearing the end of the trial study--I'm in Phase 1 where my schedule was 3 weeks of treatment and 1 week break. I have shown minimal imporvement but I trust my doctor and he told me that for the most part a lot of patients have had success with this drug. There's a lot I can tell you so feel free to ask me anything.

carrie_b
Posts: 5
Joined: Aug 2009

Hi all,
I just enrolled in the SGN-35 clinical trial phase II for my ALCL. Very excited. Hope it works. Would be interested in knowing some of your side affects NeekieNoo...how many cycles did you have. They want me to have anywhere from 8 to 16. My first cycle went well, no side affects so far. Am hoping the antibody does what it is supposed to and targets the CD30 marker expressed in my ALCL. Any information you could give about this study would help!!
Thank you!

kahollan
Posts: 2
Joined: Nov 2009

http://www.miamiherald.com/460/story/1338771.html

kahollan
Posts: 2
Joined: Nov 2009

http://www.miamiherald.com/460/story/1338771.html

catwoman6
Posts: 20
Joined: Dec 2008

Hi Denise3. Sorry to hear about your condition. I am 45 and going thru this too. So far I have had ABVD, ICE, GVD and now mini-BEAM. Then my onc is talking Allogeneic stem cell trans. That's when you use a donor's stem cells instead of your own. Why haven't they tried that on you?? I found a website while I was going thru my GVD treatments. It is www.chrisaltdelete.com. He is documenting his entire treatment and right now he is going thru the SGN-35. You can go to his webpage and read all about it. It's pretty cool. He seems like a very nice man. I have never wrote to him, but read about him all the time. I think you should see another oncologist! I still can't find one that I trust. Always get second or even third or more opinions. Don't give up!!!! Please let me know how you are doing. Hope the webpage helps.

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