This is really tough but I've pretty much made the decision to stop SGN-35. It's not what I want to do, however I can't justify not having a life just to live if that makes any sense... I could deal with the pain from the muscle aches and the light peripheral neuropathy that was present pretty much since I started this drug. However, for whatever reason, the neuropathy has gotten exponentially worse in the last month or so and seems to worsen every day. If I keep going down this road, there is no doubt I'll end up in a wheelchair and have to rely on someone to feed and groom me. I guess you could say this is pretty much a no brainer...
By the way, just wanted to throw my support to fellow Hodger's Marsha and Kirsten who have also recently stopped the trial.
So, where do I go from here? To be honest, my options are rather limited. My first order of business is to try and reverse or stop this neuropathy. I had a nice conversation with a fellow Hodgkins friend earlier who actually ended up in a wheelchair for a while from SGN. It just so happens he is being treated down here in South Florida and was prescribed an antibody therapy called IVIG which he mentioned helped him right away. I'm going to contact his doctor and see if I can get in to see him as I'm sure there is no one else in the country who can reference a case like this since there are only a hundred or so people who have done SGN and maybe a handful of people who have had such severe side effects from the drug. I figure and hope that once I stop the SGN, some of the neuropathy will go away on it's own but Kurt mentioned this could take months and quite frankly, I don't want to wait that long. I know my time is probably limited (relatively speaking) and I want to get back to living as full a life as I possibly can while I'm lucky and blessed enough to be here. I know this sounds a little grim (sorry Mom) but I'm just trying to be realistic.
With that said, I'm not giving up hope... If anything, I am more determined than ever to get "back in the saddle" so to speak. My plan is two-fold. First, get the neuropathy under control (have a plan) and secondly and most importantly, find another option to control the cancer. Understandably, I'm a little leary of starting a new trial right now. That said, in the spirit of chasing a good quality of life, I also don't want to do anything really toxic as my body recovers from this SGN.
Cue up the famed Lymphoma specialist Dr. O'conner in New York. I've been meaning to see him eventually but didn't think it'd have to be so soon. So, my plan is to try and contact his team tomorrow and hopefully book a trip to New York later this week. My hope is that I can get in and see him within the next few weeks and with his input, Dr. Ram's input in Detroit and the team in Miami I can make an intelligent decision.
This is going to be a lot of work and quite frankly pretty daunting as I sit here and type this while feeling like crap. By the way, I have to say, I'm thankful right now that I am able to type!
Anyway, that's my update. I hope this doesn't come across as too convoluted because I have to say my state of mind is a little scattered right now... There is so much to process and assess it's almost overwhelming. I know that I will figure this out however and hopefully choose the best option for me going forward.
And the saga continues...
7 comments:
Hi Chris - Marlene here. It's time for me to come out of the shadows and let you know I'm a follower!! I've been following your blog for some time now - I found your link thru my sweet sister-friend Kirsten's blog and I just can't stop reading you!
So I'm throwing my support to you Chris - I doubt your decision was made lightly. So much to think about so many things to consider and figure out the who/what/where/why and when of it all.
I salute your determination and want you to know you have one more person on your cheering squad.
Breath in.... and out.
Can't have been an easy decision--I'm rootin for ya.
Hey Chris -
I am still out here, waiting for each of your blog posts and following every word. Your positive attitude, yest for life, and perseverance continue to inspire me.
I am sure you will make the right choice.
With warm thoughts and prayers...
Your friend in the D,
Gail
Oh Chris, reading your words tonight (and what is undoubtedly between the lines) makes my heart ache for this predicament and the unfathomable decisions we have to make.
Your plan sounds very sensible and we up here (me, Ian, Mom, Marlene who just revealed herself (hi Mar!), and many, many others) are behind you 100%.
Thank you, too, for all the support and understanding you've extended to me despite all you've been going through.
Fingers crossed that you'll be in to see Dr. O by the end of the week. We were in touch with his office recently too and they were willing to get us in ASAP, so I'm sure that'll be the case when you phone.
Thinking of you,
Kirsten
Chris, I don't know you but reading your words hese past weeks I believe you to be a very strong person. One of the reasons I keep coming back is that you remind me of my own Chris and his strength.
I can only imagine the pain you are dealing with , I saw the start of it with my Chris. He by the way was having an infusion once a week for three weeks and 2 weeks off ( 1.2) he had had 7 infusions before contracting H1N1 . I know how much pain he was in then but I don't believe he had reached the level of intensity you are experiencing . I don't know how you are functioning. I wish for you what I would wish for my Chris . Loraine
Half the battle is making the decision and you've done that, so well done you! I love and have always loved your can-do attitude no matter how big the hurdle you're facing. No doubt you are scared and uncertain, but sounds like there is already a plan forming and I look forward to hearing that you're on a more successful trial/treatment - one which can let you live the way you wish to......love'n'hugs........Vx
Dr. O is my regular doctor, so I can tell you he is amazing. His whole team is. I know he will have at least 2 or three things for you to try. There is literally new stuff everyday coming out for them to try. He also just got back from a lymphoma meeting in Hawaii so he may even have more novel ideas. Ill be up there tomorrow so if your up there say hi!
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