The Leukemia & Lymphoma Society Community: Message List

Re: How do you share your story with strangers?

communityreply@lls.org — Fri, 17 May 2013 11:31:55 GMT

I went for an open sharing approach after a number of months not having my blog Google etc searchable. I think we all find our own level of comfort; in my case, it was the benefit of connecting with others with similar conditions that made me be more open.

Andrew

My Lymphoma Journey

Re: Very Cool

communityreply@lls.org — Wed, 15 May 2013 11:15:19 GMT

I also think it's cool. Good production values too!

Re: Any mantle cell lymphoma patients who have had stem cell transplant?

communityreply@lls.org — Sat, 20 Apr 2013 10:45:36 GMT

Hi,

I was diagnosed with MCL June 2009, had R Hyper CVAD and auto SCT that year, relapsed about a year later, had salvage chemo followed by an allo SCT August 2011. So far, so good, with no serious GvHD. It is a pretty gruelling process, and recovery, particularly from the allo SCT, takes time.

For the gory details, you can check our my blog My Lymphoma Journey (just use the 'weekly updates' category for the treatment and reaction details) or my e-book, Living with Cancer: A Journey (same info, just organized more neatly).

So a number of us have made it through SCTs. Be prepared for difficult discussions on odds etc but definitely better than the alternative.

Andrew Griffith

Re: Suicide rates may be higher in stem cell transplant recipients

communityreply@lls.org — Sat, 13 Apr 2013 22:19:44 GMT

Quite a discussion. While we will never know the complete truth behind the statistics (and whether it captures the carelessness factor), it is a large survey which should tend to even it out.

I always find myself, at each (fortunately less frequent) clinic visits, automatically looking at the younger people around me and making me realize not to feel sorry for myself. Of course, there are some older people to, which balances things out, but in the end, we have to enjoy the life we are given, and be thankful for what we have, as it is better than the alternative.

Re: Suicide rates may be higher in stem cell transplant recipients

communityreply@lls.org — Thu, 11 Apr 2013 11:35:32 GMT

thanks for sharing. Found this a bit surprising, except for the link between chronic GvHD and suicide.

Yellow fever vaccine?

communityreply@lls.org — Wed, 10 Apr 2013 20:56:06 GMT

Wondering whether anyone has had to travel to an area requiring yellow fever vaccine and whether their hematologists allowed them to have the vaccine as it is a live vaccine. NCIB info suggests it may be ok 2 years post-transplant.

Sign of progress that I am asking these questions

Andrew

Re: Chemotherapy in Pill Form

communityreply@lls.org — Mon, 08 Apr 2013 20:33:28 GMT

Always good to be prepared. Sorry I do not know the name but I would just ask if there is any option to take any required chemo in pill form.

But I hope none is necessary and you can have a good trip.

Re: Chemotherapy in Pill Form

communityreply@lls.org — Mon, 08 Apr 2013 11:28:30 GMT

I do know that some pill forms of chemo, to treat slow growing indolent lymphomas, exist, but it really depends on what type of cancer you have. No harm in asking your onc; in my experience, they are open to such questions and their answer will make you better informed about your treatment and why they are making this particular recommendation.

Andrew

My Lymphoma Journey

Re: Need an Opinion --- from a second Opinion

communityreply@lls.org — Fri, 05 Apr 2013 11:26:24 GMT

My situation is different - mantle cell lymphoma, treated successively with auto and allo stem cell transplants. I used second opinions as independent opinions on the proposed course of treatment, particularly with the more aggressive allo SCT. Fortunately, while the doctors laid out the risks somewhat differently, and had slightly different procedures, they were in fundamental agreement that the only option for someone in my situation was an allo SCT.

Hope this is helpful.

Andrew

Re: Nate's 2nd Transplant-versary!

communityreply@lls.org — Sun, 03 Mar 2013 11:51:26 GMT

Congratulations to both of you. Wonderful news.

Andrew