Unexpected

Several have mentioned their infusion center arrangements. I went to an oncology practice with about 28 doctors scattered in seven locations . Two of those locations were their main infusion locations (a few did not do infusions at all).  The center I used had about 30 stations, all "open bay," so people could freely visit with one another. There were also four private rooms with toilets, for people who needed them.  I made several friends at the time, and most (but not all) liked to talk.   Several people came only for iron infusions, and many of them were not cancer patients, and never had been.  A few other non-oncology patients came for other forms of infusion that were neither iron or chemo. There was a blanket heater, drinks and snacks which volunteers gave out, and Wi-Fi .  It was about as pleasant as such a place could be .

My totally non-scientific results were that breast and colo-rectal were the most common cancers there. Lymphoma was fairly rare, but one friend from a former job who had mantle came for fluids . 

The friend whom I have mentioined whom I took for prostate went to the other main infusion center in the group. It had about 25 open-bay stations and at least one private one for standard-therapies, and an adjacent infusion area for clinical trials only, with about a dozen or so stations. On a differnt floor there was a clinic which I believe did only SCT patients, but I never went inside there.

My mother-in-law down in Charleston had an ovarian cyst a few years ago (which ended up being benign) and went to an oncologist who had a solo practice, and did infusions in his office.  So, I guess, infusion centers vary dramatically in size and accomodations.

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illead said:

SCT

Yes it is.  He almost had one before, but since he came back from deathlike to incredible health we started questioning.  In my research prior I had come across 3 doctors doing extensive research with mantle cell, they really stuck out to me over others, one in WI and 2 in Germany.  Bill emailed with just simple facts ie, I have mcl do you suggest a SCT?  We didn't think they would write back, but all 3 immediately did, and were very gracious and willing.  They all suggested not to.  One of the German docs even wrote back twice.   I think because the cancer cells in MCL are impossible to kill completely, thus one is never "cured"  One of the earmarks for MCL is chromosome damage, so I think that must be another factor in no cure.  I don't really understand that part of it.  We have asked 2 oncs and gotten totally different answers. MCL is so new, evidently a beast of it's own and rare, most doctors have not dealt with it.  Bill was all set to make an appt. with Cedar's Sinai for a SCT but we just didn't feel right about it.  If the news is not good on Tuesday, we will be writing those doctors again and asking about the ibrutinib (I mentioned that in an earlier post) and also about a SCT and anything else.  In our correspondence, Bill asked if there was anything being done in Germany that we were not doing here and the doctor assured us that we were up to date in the states.  Since our cancer center is affiliated with UC Davis, they confer with the best so we are not concerned about the fact that Bill's onc is not that familiar with MCL, he is very willing to listen to us and he thinks our talking to the other doctors is good.  I know you are very happy with your SCT and we are thrilled for you, I always follow everyone's story.  I will probably be asking you more about that in the future.  I am so sorry this is so long and probably TMI but I appreciate your thinking of us.  I'm doing pretty well, I try not think about it but I wake up in the morning with a big knot in my stomach.  We knew it would happen but we were hoping he would stay in remission a good long time. 

Thank you Coachmike, Becky

I know for myself that when the SCT was my route of therapy of course i was initially fearful, however looking back now of course im so happy i did it. It honestly saved my life. Of course Bill and I had different cancers, because im still hopeful that Bill HAD cancer and this is not cancer, but if you ever have any questions about the process I am here for you. I took a journal of some sort during the whole process and would be very happy to share my experience with you.

Praying For You Guys

illead said:

Thank you again

Yes, for sure we have not ruled out an SCT, so I'm sure we will have some questions if it becomes an option.  It's good to know you are there for us to count on.

Thank you so much for your thoughtfulness. Becky

Becky,

Praying for you two that this is NOT a relapse.  Oh, I can only imagine how you are feeling right now and I am so sorry for all of this stress.  Sorry it took me so long to post,just signed on the sight.  I've been signing on to it less and less.  Don't know why, I don't mean to not be supportive!  Somehow right now that just works for me but it doesn't change how much I care about everyone on this sight.

So as you go thru the weekend and wait please know that I am with you - praying hard that this is not a relapse but is maybe related to Bill's recent illness.  Hey, who knows?  As we all have learned over and over again ANYTHING is possible.

Praying hard.

Hugs,

Donna

illead said:

To all of you

     I have to say that we are really bowled over by the support that you all have sent.  I have to admit something, I have been a little concerned about the lack of commenting lately, although I really understood, none of us can be "up" all the time.  I think it has just happened all at once.  It got to the point that I was thinking maybe it was me, ( we women are just nuts  aren't we?, always overthinking).  I just thought I may as well not even try anymore.  I know, very stupid.  I apologize to all of you.  You are truly a a great group of people and we will treasure and reread your comforting words often.  Jim, you have been such a grounding influence to everyone, and Roquie, a fragile rock. Thank you for noting our faith, it's always being tested isn't it?  GKH, always there and what sweet observations you have.  It really means so much.  I don't mean to sound over dramatic, but for those who do not know, MCL is one of the newest, and worse lymphomas there is.  Only about 3000 new cases a yr and little information.  The prognosis is that it is incurable, and will always relapse.  Once that happens there is little hope.  That has changed however, there has been a lot of progress since then but it still remains incurable, and not much known for long term, although there are new meds and one just came off trials only for MCL.  Although the hopes are for other lymphomas and leukemia, it was pushed through for MCL only for the moment because of the dire need.  Bill was given a chemo that had just recently been taken off of trials and his recovery was dramatic.  He was called the "miracle man" at the cancer center.  It was obvious today that his onc was even shook up.  So although we were always guarded, we were hoping for more time before a relapse.  So sorry for the droning on, it was just a real blow.  Bill is fine though, still feeling great and it will take a mac truck to get him down, his glass has always overflowed!  Tonight was much better for me, it's amazing what a "strong" Maker's Mark old fashion and the Westminster Dog Show will do .  One more thing is that until we know for sure we are only sharing this with our son and a special couple that we love very much, and you.  We feel it will be too much for some, so more prudent to wait for the correct info.  Thank you for being there.

Bill and Becky

Hi Becky,

 I joined the group in July of 2010 and have posted a little over 3,000 posts, often wondering if folks were getting sick of hearing from me.  I have seen so many people come and go, some sticking around and others that disappear for good. We have many "old timers" that haven't posted in ages, but I just remember their battle and the times we shared and then say a prayer and hope all is well with them. This year was hard for me with posting as it was the year(2013) that Steve retired. We had some adjusting to do which made it hard to post as often.Also, many of the old group had dropped away and quite a few times when I posted to new folks there would be no response back. I think we just have to do what works for each one of us and understand that when someone fails to respond or hasn't posted in awhile there is probably a good reason for it. I know I check the site daily and try as best as possible to be supportive. Your dear Bill will go to the head of the line in my daily prayers, and my support will always be here. Take care and keep us posted. Love...Sue

(FNHL-stg3-grd2-typA-Dx6/10-age 63)  

Hi Becky and Bill,

I too try to read through the posts as often as I can. My hubby had surgery last friday and I got to be the nurse for a change. I am exausted ...

I'll be thinking good positive thoughts for both of you. Hopefully it's nothing much, but if it is, you both will handle it with courage and grace.

How wonderful that Bill is fishing today. The rain is supposed to return Saturday afternoon, but for now it feels a lot like spring. My daffodils have all started blooming in the past week.

Waiting for the newest grand baby to arrive, and have another baby shower to attend on Sat. Finally have some time to sew, hubby went back to work today. Hooray.

Take care and know that those of us that don't post often still read and send you and everyone all the best.

Hugs from the other Nor Cal resident

Lisha

Bill and Becky,

I think it is safe to say that when someone is shaken to their core as you both probably are, we all feel it too....Sending you prayers, strength and love and hoping it surrounds you. We will all be anxiously awaiting to hear more on this. As with everyone else I am in high hopes that it is something else causing this.

XXXOOO

Carie

illead said:

Thanks John

As tomorrow gets closer I wake up with a harder and bigger knot in my stomach.  It was calming to read your kind words this morning.  His appt isn't until 3:00, I'm sure it will be major scanxiety. We're hangin in there tho.

Becky

Sending prayers and love to your and Bill.

Mike