Aboard Dignity, How Much Can A Family Endure?

[Lagoon4us]

During the early days of our decision to buy a cat and resume our life aboard we came across Dignity's excellent blog, it was craftily put together and to this day is a treasure trove of information.

For those who followed Dignity's blog they would know that Steve developed a form of cancer and is undergoing treatment.

Now i read that Dignity suffered a swage failure and the rig went over the side and had to be cut away by the crew, as per the blog Dignity made it back from NZ to Australia in 8 days regardless.

I don't know the Southwood family at all but i gotta say our heart goes out to them, what a story i so hope Steves total recovery caps it off.

Best thoughts and wishes

[Jimbo485]

Frank, what is the address of their blog?

[Lagoon4us]

"Aboard Dignity (Lagoon 420) Blog"

Cheers Frank

[xymotic]

http://aboarddignity.com/blog/

[Lagoon4us]

Woops sorry, thanks "X"

[ParidiseParrot]

According to the cancer website's he has a good chance of 3 or 4 more years.
Median lifespan is about 3.8 years from diag.

[ess105]

This is Steve, owner of Dignity - haven't been on here for some time. Life takes it's turns and we're now on a new journey. Lagoon4us - I really appreciate your wishes.

As you can imagine I have been all over the web trying to get stats on my condition. It is extremely rare and the stats are for similar cancers - not mine. The vast majority who form the stats are elderly and are subject to many other complications. If luck is an appropriate word I have yet to turn 50 and having lived and travelled aboard Dignity for 4 years I was fairly fit.

ParadiseParrot, I have seen your stat before. The following link refers to trials very close to my current treatment : Consolidation reduced dose whole brain radiotherapy (rdWBRT) following methotrexate, rituximab, procarbazine, vincristine, cytarabine (R-MPV-A) for newly diagnosed primary CNS lymphoma (PCNSL): Final results and long-term outcome | OncoLink Cancer Re

The stats, for what they're worth, are more encouraging.

[ParidiseParrot]

Mom got full brain radiation to combat the stage 4 lung cancer that went to her brain last year. It was very effective but caused some brain damage of course.
Keep your spirits up and good wishes.You are not alone.

[ess105]

This probably not the right forum for this conversation but who cares.

Sorry to hear about your Mom and really hope she can have a good time ahead. I'm definitely not on my own and while I wish I was the only one suffering (actually, noone was) the support of those around us is, regardless of their connection to us and/or the disease, very meaningful to us.

PP. Side effects are going to be a concern for anyone receiving WBRT. If you don't mind I'd really appreciate knowing your Mom's total dose. I suggest you use a PM if that helps.

[GaryMayo]

Originally Posted by ess105

This is Steve, owner of Dignity - haven't been on here for some time. Life takes it's turns and we're now on a new journey. Lagoon4us - I really appreciate your wishes.

As you can imagine I have been all over the web trying to get stats on my condition. It is extremely rare and the stats are for similar cancers - not mine. The vast majority who form the stats are elderly and are subject to many other complications. If luck is an appropriate word I have yet to turn 50 and having lived and travelled aboard Dignity for 4 years I was fairly fit.

ParadiseParrot, I have seen your stat before. The following link refers to trials very close to my current treatment : Consolidation reduced dose whole brain radiotherapy (rdWBRT) following methotrexate, rituximab, procarbazine, vincristine, cytarabine (R-MPV-A) for newly diagnosed primary CNS lymphoma (PCNSL): Final results and long-term outcome | OncoLink Cancer Re

The stats, for what they're worth, are more encouraging.

Remember, stats are compiled by people participating in the accepted treatment. Like the unemployment figures, people that no longer look for work are no longer counted.

PM me if you want to talk about nontraditional treatments. My wife was supposed to turn room temperature in 2000. Still kicking and no doctors in sight.

[ess105]

Originally Posted by GaryMayo

Remember, stats are compiled by people participating in the accepted treatment. Like the unemployment figures, people that no longer look for work are no longer counted.

PM me if you want to talk about nontraditional treatments. My wife was supposed to turn room temperature in 2000. Still kicking and no doctors in sight.

I've made a point of only looking at trial stats. Trial findings are heavily scrutinised and rarely do people drop out. Those that do drop out are counted.
Each individual is of course different. I have good an bad points on my side. On the +ve side I was fit (sort of still am), I am under 50 and most of the time have a very positive attitude to my recovery. I have also tolerated the first 5 rounds of chemo pretty well. I would like to the lesions have gone but the best I can say is they've reduced in number and size. On the negative side I have a combination that is incredibly rare. The PCNSL is reasonably rare as lymphoma often reaches the brain from elsewhere. But too too rare. However, at least 95% of PCNSL patients have B-Cell lymphoma. Having lesions in the spine very rarely turns up and I haven't been able to find any meaningful information on spinal lymphoma let alone having it in conjunction with T-Cell.

The doctors here are honest enough to say there is no real data on this to guide treatment bar a few understanding amongst the global haematology/oncology community. Is this good or bad? Noone knows. And what happens to me won't provide an indication to others as much is going to be down to me. One patient won't make a case.

Going back the study I referenced earlier (which was analaysing the effect of reduced irradiation) the results are the best I have seen at least. They talk about 81% overall survival after 5 yrs for the group who were still in the trial after chemo.

Given that I have to figure out how to balance how I live the rest of my life and how I leave my close family these time frames are important. I have no specific answers to this question but I am concentrating on survival and having a reasonable quality of life.

Final point on this subject. Do my wife and I have any regrets going cruising for 4 years? None at all.

[rebel heart]

Ten days to go before we split and I spent it with a sawzall cutting a steel fuel tank into pieces. Chain plates are off, heat exchanger is off, no fuel tank to plumb to, small storm coming tonight. Wife is pregnant and we have a two year old.

I've learned a lot about myself.

[Sonosailor]

Hi Steve:


Surely, Dawn and I are so sorry to hear about your troubles, and we wish you the absolute best. It is strange, how we felt you two were so courageous to leave the Caribbean and us and carry on around the world while we just keep piddling around between the islands. I can tell you bring the same courage forward when dealing with your present troubles. We really enjoyed the short time we spent aboard Dignity, and hope we can somehow meet up with you guys again.

Laurie and Dawn,
S/v Cat Tales

[JanetGroene]

Just know that it's a big family out here and we all care.