19 replies to this topic

[reedgirl]

Just curious to see if anyone on here is getting bombarded with phone calls or questions about this new treatment for leukemia???  We are from the great state of Pa, so it was on the news locally that this new cure was discovered.  We've had a few calls from people asking if we heard or wanting to tell us all about it, like we wouldn't have already heard it.  Also, several times that we've been out and about people can't wait to come up to us and talk about it.  I'm kind of getting sick of people bringing this subject up.  How have you all been replying to these questions?  Are we the only ones getting asked about this? UGH

All this talk about this frustrates me as much as people, all the time, like daily, coming to us to say how great my husband looks.  Really....what do they honestly expect to see???? Maybe I'm just in a frustrated mood lately, this stuff is just really getting under my skin   I'm tired of hearing how he looks like he used to look or how great he looks or "hey did you know there's a cure for leukemia now"

Sorry to vent on here, just curious as to how others handle these irritating moments

Audrey

[Tex]

You mean the injection that cured two of three people?  No one's asked me about it, but why would they?

Do you work at a hospital or oncology office?

[reedgirl]

No, my husband and his father have a successful hardware store in our small hometown.  His father passed away very unexpectedly in Feb.  My husband was diagnosed last July, 2010 to the shock of everyone in our town.  Unfortunately since his father passed I had to give up my business of being a hairstylist and go to work with him.  Every day people come into the store and ask how he's doing or comment on how he looks or now bring this "cure" that yes seems to be successful on 2 out of 3 people.  I'm glad they have this discovery, its very promising for the world of cancer, I just dont want to talk about it to people anymore, esp people who know nothing about blood cancers

Hopefully you wont have to deal with the questions

[momruns]

No I have not heard about the new leukemia cure.  I work in a hospital and no one has said anything.  And I do agree that it gets old when people say "Loreta you look good today", did I look that bad 6 months ago )  Diagnosis 2/4/11 haha.  Was I missing something in the mirror.  I know that they are trying to be supportive and some days it is okay when they say it but when the fatigue gets me or I worked 12 hours in the operating room standing the day before I just grin and bear it.  It is nice to vent on this site, I do appreciate the support from those who I know care as for the rest guilt for being as*&(**holes the other 364 days of the year makes them feel better.  Thank God they are in the minority.

Loreta

[jjg]

My Mum asked me about. Turned out there was a story about it on one of the abc radio stations (Australian equivalent of npr). It's super interesting from a scientific point of view but the "hey did you know there's a cure for leukemia" would be really very annoying.

I was quite happy to talk about it to my mum and happily surprised by her sudden interest in things scientific, but I guess she does have a vested interest. If I wanted people to leave me alone I'd invest 5 mins downloading all my limited knowledge of CML on them i.e. regurgitate as much of Trey's documents as I could remember. I'm a bit of nerd so I enjoy doing this anyway and it seems to turn most people off pretty quick. If they are still looking interested one could start on Gleevec, or which ever TKI he is on, and talk about the side effects...particularly the GI ones. If they're still there after hearing about the number of loose stools he had today then they are either very weird or your new best friends.

I hate getting told I look great when I feel shit. Occassionally I'll just say well actually.....  but mostly I just take a deep breath say thanks and try to be happy that people care. I even get frustrated with myself for hating when people are trying to be nice.

Don't appologise for venting it makes us all feel better when we know somebody else is feeling the same way. Unfortunately we've all just gotta move on.

One of my workmates, also in his 30s, has been diagnosed with testicular cancer. You'd think I'd know what to say to him but it is really hard, I expect I'm just as annoying as everybody else.

[Trey]

If these three individuals who responded to the CLL vaccine treatment are cured, then so are many of us on this CML Board (but we know that is not accurate).  The NEJM report (the more detailed story) says that the CLL study participants became cytogenetically negative.  In other words, the BMB was clean.  But as we know, that does not mean the PCR would be undetectable.  And even if it was, that still does not mean "cured".  However, the news story is somewhat interesting if put into its proper context.

I will re-post here my response to this issue from another thread:

http://www.msnbc.msn...ncer/?GT1=43001

To summarize what the article is discussing, it is discussing a type of leukemia vaccine. The  term "vaccine" can be confusing when used in  this context, since a vaccine is normally used to prevent a disease  from occurring, such as a  flu vaccine. A leukemia vaccine would be given to  someone who already has the disease, to control or possibly  even  eliminate the disease. There are several different leukemia  vaccines currently being tested.

In  general terms, the leukemia vaccine trials are trying to stimulate the body's own immune system T-Cells to mount a battle against leukemic cells.  Leukemic cells look mostly normal to the body's immune system, so they are generally left alone.  But  leukemic cells are actually different  than normal cells in some important ways, besides just being malignant. They have subtle variations that make them actually look slightly different, although not normally different enough to trigger attacks from the T-Cells. So a vaccine would teach the immune system to  recognize  that the leukemic cells are different, since they have greater amounts of certain substances in the cells. The theory is that  if you can teach the body's T-Cells to recognize the leukemic cells as abnormal, including the leukemic stem cells, the immune system  would  see them as a target and kill them. And since the leukemic stem cells are the source of all other leukemic cells in the body, killing  them  would be like cutting the head off the snake. But even if it did not kill the stem cells, a vaccine could be used to control the disease  much as Gleevec and Sprycel kill the leukemic offspring cells, but not the stem cells that produce them. Remember that this is mostly theory and not yet proven as actually possible, although there is some  evidence so far that the theory works to some degree on some people.

There are various types of vaccine trials ongoing around the country.  Some involve a peptide "marker" called PR1, others involve WT1, and some use a  person's own leukemia cells that have been irradiated. So theoretically, the leukemic cells are different enough  that the body's immune system could be taught to recognize those differences and respond. As previously discussed, leukemic cells look very much like regular cells, so they are not normally attacked by the immune system's T-Cells. Each type of T-Cell is specific to certain invaders. A polio vaccine teaches the body to make T-Cells to fight  anything that looks like a polio virus, and the effects last for a  lifetime. That is the theory of a leukemia vaccine, except that it is  given to someone who  already has leukemia to control or eliminate it.  So a leukemia vaccine could be a cure, not used for prevention.

Now, regarding the article cited above, this is discussing a very novel leukemia vaccine approach that turns patient T-Cells into something called "chimeric antigen-receptor T cells". In trying to explain this in understandable terms I will need to make an imperfect analogy.  This generally means that some of the body's  T-Cells are changed so they grow new external "antenna" that are highly attracted to leukemic cells, and they also grow new "docking ports"  that match the leukemic cells external "shapes" (remember this is an imperfect analogy). After  "docking" with the leukemic cell, it is destroyed.  Sounds wonderful, and it could work in some cases.  But  there are issues that need to be overcome.  These genetically engineered "antenna" and "docking ports"  (wish I could do better, but  let's stick with that) can sometimes also attract and kill non-leukemic cells that look like leukemic cell docking  shapes.  So in teaching the T-Cells to kill something new like leukemic cells (yippee) they have also been taught to kill good stuff like, oh, let's say organ cells  (boooo hisssss double bovine sharts).  I am speaking in general terms here, not about this specific CLL issue in the article.  But if you  read the NEJM article associated with the main article, this issue is pointed out as something that has happened previously when trying to use "chimeric antigen-receptor T cells".  So it takes some hard work to eliminate the toxicity of things like this so they only attack what you want them to attack.  But what else is new.   That is how progress is made.

So far the study looks like it has merit. But there is much work to do.

A cure for CML will come along some day in the relatively near future.

Here are some links to general info on leukemia vaccine research:

http://www2.mdanders...apr/4-05-1.html

http://www.medicalne...hp?newsid=48990

http://www.cancer.go...s_CDR0000067600

[Tedsey]

Audrey,

I guess I must have slept through everything, or the news from the East hasn't hit the Midwest yet.  I never heard anything about a cure for leukemia, let alone CML.  If only it were true...  No one has said anything to me yet either.

I have to comment about the "You look good!" comments.  It sure as hell gets annoying.  I like how you put it.  What do they expect to see?  We just had good friends over tonight.  They kept on telling me how good I look.  Well, one of our friends' father died from pancreatic cancer.  Perhaps he is equating this cancer to his father's.  Chronic blood cancer is a different animal.  But the general public, no matter how educated (even doctors, believe me) lump cancer into one big category.  We are all emaciated, pale, bald, and weak.  And if we don't look like the dying on in the media, then we are not really all that bad off.  Others just write you off as already dead.  I have experienced both.  And for these reasons plus others, I don't tell very many people about my bad blood.

Another comment I hate is, "Glad to see you are back on your feet again."  When was I ever off my feet?  I didn't even know I was sick!!!!  It seems to scare people when I tell them that I never feel or felt the leukemia and it was discovered "by accident" at a yearly check up.  The side-effects from the TKI are the only thing that make me feel like I actually have a disease.  Oh, and the pill every night.  Here is an additional comment that drives me crazy, "Nice to see you are able to get out now!"  Uh, since when was I not able to get out?  Even with severe anemia, I still had to take care of my toddlers, shop, keep house, cook, etc., etc.  It was very hard.  I couldn't push the stroller to the park without having trouble breathing, but I did what I had to do to keep our house running and our lives as normal as possible.  This crappy disease has never kept me in bed, or in.  I guess I just HATE being a severely ill person sooo much.  I want to be healthy and strong again.  I still get jealous of other young families that don't have the burden and the dark shadow of disease AND the image of death hovering nearby.

Gotta write that book called, "What NOT to Say To a Cancer Patient EVER!...You Dimwit!"  or "Interacting with People Who Have Cancer for Dummies"  If anyone wants to chime in with a better title...

Here is to the day we don't give the goofy, cruel, insensitive and just plain dumb things that people say to us and our loved ones a second thought.

Take care,

Teds  

[GerryL]

Hi Teds,

I just had a good friend feel the need to tell all her FB friends I had leukemia as an explanation why I didn't appear to be the life of the party - I got her to delete her comments, which she did. I don't mind people knowing - would just be nice if I was the one doing the telling.

Gerry

[WoofWoof]

I'm far from being "bombarded" but several friends have asked me about it. I just explain that it's not my type of Leukemia, is still in it's infancy but is encouraging & isn't it great that it's right here in PA. I also use it as a spingboard to encourge them to donate to the LLS.

Re: looking good: when someone says to me "it's good seeing you" I always say that I'd rather be seen then viewed.

[reedgirl]

Trey,

   Thank you for the detailed explanation.  Assuming there would be talk on here about that story I came looking, creeping, for info.  As usual, I was not disappointed with your comments, you are so very knowledgeable, your analogy may not be perfect, but for an uneducated, imperfect mind like I have it helps make sense of things!!!

   Its great knowing that people care about Greg, but day after day we are asked "how's he doing", or told "he looks great, looks back to himself"...sometimes I just want to scream!  Now, its turned to "hey, did you hear about this vaccine"  or better yet, someone printed the article from Yahoo and brought it to us.  I know these people just care and feel like they're doing something helpful...maybe I'm just finally tired of the whole deal and reached my limit.  Tomorrow or next week might be a better time and I'll start over and not feel tired of things.

Thanks again, your insight is immeasurable!!!

Audrey

[reedgirl]

Woof,

  Thanks for the reply...I take it you also live in Pa??? How did you handle the heat a few weeks back?  The heat combined with the Sprycel gave Greg a terrible rash on his stomach, back, arms and legs...at least it wasn't on his face like the Tasigna.  I love summer and love the heat but will admit it was pretty toasty out!

Love the reply you give....just might have to start using that one!

[reedgirl]

Gerry....that is so uncalled for!  Wow, I just can't believe someone would broadcast that info!  Thank goodness you had it deleted, so much for privacy and you being the one who decides who knows what about your health!

Teds...sign me up for the first copy of the book!  You are so right about the comparison between blood cancer and other types, people don't understand that because you look the same doesn't mean there isn't a battle going on inside your body each and every day.  And, just because you aren't going for treatments once a week doesn't mean you aren't having treatments, in fact these treatments are worse.  I tell people its like taking a poisonous pill every night, not knowing how you'll feel in the morning or if you'll have a good night of sleep, all just to live.

Maybe we all should designate our own day of "no second thoughts" and "here's to the dumb, stupid comments day" and celebrate with some good wine

[reedgirl]

Hi Billie,

  We are doing well, just very busy.  I get on here and "creep" on how everyones doing but don't usually post anymore.  I love keeping in touch with how you are all doing, sometimes I wish the site had a like button like on facebook just so I could agree with what people say, lol!

  Greg is working from about 7:30 am until about 7 or 7:30 pm Monday thru Friday at the store.  Saturdays we close at noon so its an earlier day, we usually get home around 1 or so, that's when he crashes for about an hour or two.  The last couple Sunday's we've been going in and trying to catch up on paperwork.  He's so over worked and stressed out.  He knows the business better than he knows himself, grew up in it, but its not the same for him since his dad is gone. I am now there working with him, gave up my beauty shop to work with him and help but I know nothing, well I'm learning a lot now!  He was pretty much making all the decisions in the business but had the peace of mind knowing his dad was there for him, now he's gone.  I am so happy that his dad left him the store, so is pretty much everyone in town and all the customers!  The stress in this unfortunate situation comes from the "step" mother.  I have always had a great relationship with her, treated her better than his actual mother, unfortunately after his dad passed, within a week she has become someone I can't even look at.  My heart breaks for Greg and his siblings, esp his sister.  This woman has done things that would make my father in law not only "turn over" in his grave, but probably jump out if he knew!!!  The worst part is that we live in a very small town and our home is 3 houses away from hers, ugh.  I am trying, struggling, with letting things go but man a live is it hard!  It just feels so crappy to have been hit with what we have, Greg's diagnosis last July, his father passing unexpectedly in Feb, me changing careers...its overwhelming.

  Whats a vacation????? lol!  We did take a few days during his last visit to see Dr Talpaz to travel through Michigan.  We used to snowmobile in the Upper Peninsula of Michigan, so we took a day to drive up and see what it looked like in the summer, then took a ferry boat out to Mackinac Island, thats a great place to go, so relaxing.  So, we did have a little mini vaca...just had to work until very late for the next 2 weeks to catch up!

  I keep telling myself there are other people who have it much worse, so I don't want any of my rants to sound like complaints, we have much to be thankful for.  At least he is able to work every day and function somewhat normally.  He is responding well to the Sprycel, not sure where he is with his results....I don't understand what they mean so I'll be forwarding those on to others to interpret, lol.

  I hope you are doing well and responding to your med's.  I'll join you from afar, wait I think you are also in Pa so I guess not too far...with a glass of wine to unwind!!

Take care,

Audrey

[PinkHat]

Hi Audrey,

I think I know what you feel. That is because all my workmates asked me if I heard the news. My brother-in-law was diagnosed over a month ago with CML and as my colleagues saw me crying from time to time (when I got bad news from home) they pretty much know what happened to him and how the whole family struggled to cope with the situation.

Just as you said, I really believe the people do that because they care and empathize with people suffering from leukemia and their families. They probably don't realize that most of the time we search for all details when such news come up or they really don't think that one hundred people told us the same thing before they got the chance to do it.  I guess that for you is more annoying because you get in contact to lots of people more often than a person who does not have a store would... they really don't mean harm.

And please do not worry about "complaining"... in one of my previous posts I said that I really cannot thank enough to people on this board listening to my feelings, fears and anxieties. I felt that in some ways I threw all my troubles on this board and I felt embarrassed for being that scarred and asking for so much info. It is really the only place where I don't have to hide my fears or feelings and it is amazing how much support I get from all people here.  So don't worry, just go ahead and "complain". We can listen to you, pray for your husband  and understand how you feel.

God Bless your family!

Olimpia

[WoofWoof]

Reedgirl- Yes I'm in PA just outside of Gettysburg.

The heat was almost unbearable at times but I just give thanks to Willis Carrier (inventor of air-conditioning). I had horrendous rashes while on Gleevec but since changing to Tasigna it has been manageable. One thing I have noticed is I've become extremely sun sensitive (not good for us golfers). I use a lot of sun blocker not just sunscreen. Neck bandanas, wide hats and other nerdy clothing also helps.