Shortness of breath, ,fluttering,you must be in LOVE.
Hey Deb, it all works out. I feel so much better now after my heart attack. I'm doing everything they tell me to do, and my latest test results are off the charts with my cholesterol, and A1C( diabetes). We just have to be alot more careful ( NO MORE FRIGGEN CHEESE STEAK RUNS!!!), and follow the plan. Be mindful of your body, what YOU feel is right, and what works for you. Every bad thing that has happened to me healthwise, has ended up having a silver lining for me in one way or another . Just look for it.

 

If it is not one thing it is another, Deb, i hope your heart gets better, when i think of you the last thing that comes to mind is someone with a weak heart, but that is metaphorically speaking, not medically speaking

 

Shortness of breath? Fluttering? Sounds like post-coital symptoms. Chest pains? Tell that dude to ...................... and your chest won't hurt so much.
(I'm sorry, I have a sick mind sometimes).
Seriously though:
Every cloud has a silver lining. Well, almost every cloud anyway.
At least you now know enough to keep an eye on your heart. Lots of people that wind up having major heart problems have them because they didn't pay attention to their heart until it was too late.
Glad to hear that the treatment is doing what it's supposed to do.
Keep hanging in there Deb! You handled this. You can handle anything.

 

Yup, that's what it is Ralph....love

I hope you're right, not sure I have too much left that can malfunction!! (note to God: that was a rhetorical statement )

Hope you're feeling better too Ralph!!

Thank you Steve!! That was a really sweet thing to say. How are you feeling?? I hope this last surgery did the trick for you. Stomach problems suck!!

And here I thought I was the only pervert in the group (its ok, I have a sick mind too)

Thank you so much - doing the best I can to handle everything given what I have to work with

 

more-more-more-----best wishes to you!

 

After going through everything that you did this past year and surviving that medical experience I have faith that this new bump in your road won't get in your way to a healthy and happy new year. I know you have a lot on your plate at this time (that in itself could tire the strongest of us all), but I'm SURE at some time in the future you will be able to look back on this time in your life and pat yourself on the back for a very brave, and well done job with the many crosses you've had to bear. God bless Debbi, and take some time for some pleasure in your life, you certainly deserve it. <----- stolen from Barry

 

glad to see you are hanging in there, things are still a little rough without my brother but we are getting along ok Sounds like the meds your on are doing the job thats great!! Take care Kevin

 

I know that my updates have been sporadic lately and I'm sorry for that. I am dealing with a lot of things at once.

I had initially kept from updating because I wanted to see how well this new trial drug would work. Well........I did my six cycles and as you all know, it was working like a charm. The only side effect was neuropathy, but it was pretty bad. I lost almost all the feeling in my fingers and toes but it seemed a small price to pay for a potential cure, or at the very least a nice long remission.

Well, right at the end of the last treatment I experienced symptoms that sent me to a cardiologist and found out that the initial chemo treatment from the very beginning had damaged my heart. My heart was found to be very weak so I was put on heart medication to improve the pumping. I have to go every three months now for heart scans......

So at that point, I was at the last treatment in the cycle so we stopped the chemo and held our collective breath. I did not want to dance in the streets just yet, and, as it turns out........with very good reason.

I was shown to be cancer free from September through November - we very happily scheduled the next oncology appointment for February. Within two weeks I had to call back Sloan and tell the doctor that it had returned once again I knew it was too good to be true to be in that 80% cure rate bracket.

I'm still feeling ok, but I have to go for more scans to determine if its internal or confined to the skin. My scan is tomorrow and then I have a follow up next week with the doctors to discuss the results of the scan and biopsy that was done last week........and then decide what the next form of treatment is going to be.

I wish I had better news.......

Thank you all for keeping me in your prayers and well wishes and for staying with this thread for so long! I'll let you know what we find out and what decisions we've made after next week

 

Hopefully some holiday magic will come your way. Until then we will continue to keep you in our prayers.

 

Best Wishes!!!!!! for tomorrow!!!!!!!:bl ueangel:

 

New treatments are always on the horizon. My ex's Mom has some sort of cancer that has affected her heart too. They have done some different things such as chemo, but now they have a stem cell treatment that has had some very promising results. Apparently, the stem cells in certain experimental treatments have helped to regenerate damaged heart muscle to a large extent.Patients with significant damage, were found to have regenerated quite a bit of tissue and the damaged areas have shrunk alot in scans. Phase two of NECF Mojo about to begin!! Ask about this treatment. It's just a matter of introducing the stem cells, with none of that nasty chemo stuff.

 

I'm so sorry that you aren't receiving better news than this, and that your November didn't last longer than it did. I'm staying positive, and hoping that your Doctors are on top of this, and that this just gives them the information that they need to prescribe your next treatment, and your life will be years full of Novembers for the rest of your life. God bless you Deb, and PLEASE God bring us all a happy ending to this horrible disease. A crap load of high energy prayers coming your way Debbi.

 

Mike and I are continuing to keep you in our thoughts and prayers. If there is anything that we can do for you just let us know.

 

Hang in there Deb, you have come so far, I know you will keep fighting and get well

 

Best wishes Deb.

 

It seems that you just cannot catch a break, Debbi, but I know that these setbacks will just end up making you stronger in the long run. I hope that 2012 brings you better news healthwise. Ed & I both send you our very best- hang in there- we love ya!!!

 

Hi Deb,just read all your posts. Im happy for that good news, but sad that this is taking so long to find a cure. Prayers to GOD for you Deb.

 

Ok I am going to go out on a limb here but I have to ASSume that there are some others like me who THINK they know all about Cancer but really dont and might be afraid to ask. I luckily have never been personally affected by anyone I know having this terrible disease. I just know of a few people who had a form of skin cancer that was non life threatening. They would have to go to the drs a few times of year to check on it but they did not recieve chemo or anything. So I guess what my question is.. that I am afraid to ask is... what would happen if you didnt put yourself through all the chemo and just left it alone? Is it just that you would continue to get these rashes? Cause I think your beautiful even with them! Chemo is hell on people from what I have heard and especially someone as tiny as you.

I hope Im not sounding insensitive or.. Im just seriously curious and think that there has to be alot of other people out there who read this who really dont "understand" and just come in here to wish you well. I want to understand.

Now ... as far as the heart thing. Yes.. it does suck but as someone who had heart surgery herself this year.. I know they can control and fix that!!! Lots of people I know including me, ralph, some others on here whom shall remain nameless.. and hundreds of others I can think of off hand have had and still have heart problems so while that might be another burden to bear in your basket... dont let it be a big one!!!

Thinking of you and Alex during this season and wishing you a happy one. When you get a minute.. give us a detailed explination on your condition so that dummies like me... can get ed-u-ma-cated xxoo

 

Hey Deb, sending you good wishes...hang in there and things will get better! God bless you and hopefully after the new year we will see you

 

Ok, well are you sure that's an education you really want? First, thank you for asking and actually being interested in the details. As you know every cancer is different. So I guess the easiest way to explain it is to first tell you exactly what "lymphoma" is........lymphoma is blood cancer so it doesn't always present itself the way more "main stream" cancers due. Its generally not localized to one area like, say, breast cancer or prostate cancer (which don't get wrong, ALL cancers metastasize and spread, but most start out very localized). Lymphoma is broken into two main groups - Hodgkins (good lymphoma) and non-hodgkins (bad lymphoma). Care to guess which I have?

Non-hodgkins is then broken down into sub-types, some more common than others (I'll spare you the entire list). I have a very rare, aggressive form called Anaplastic Large Cell Lymphoma ALK negative. Even THIS type can present itself in a few different ways - systemic (tumors in the organs and lymph nodes) or primary cutaneous (on the skin). This doesn't mean that its a form of "skin cancer" though. Its basically lymphocites that control the bodies white blood cells or immune system. Instead of the immune system being suppressed (as you see with diseases like AIDS or Hep C) the immune system kicks into overdrive and attacks the body thinking its fighting something that isn't there. When it does this, the white blood cells start expressing genetic proteins (generally CD-30 and CD-4) which are markers for the disease. This is what they look at under the microscope.

So my sub type comprises about 3% of all lymphomas making it very rare and fast moving. I was initially treated for full systemic lymphoma, which MSKCC is now telling me may have been jumping the gun a bit as there was never any hard evidence that it was in any of my organs or lymph nodes and no one bothered to remove a lymph node to find out - they just threw the chemo at me. That's not to say that I didn't need some kind of treatment, but I probably didn't need the toxic kind, which is sort of a bummer for obvious reasons.

At this point, I now have primary cutaneous anaplastic large cell lymphoma, ALK negative bordering on a less severe form called LyP (lymphomatoid papulosis - lol). It presents on the skin as small raised red bumps, which to the lay person wouldn't seem like such a big deal. Sometimes they go away, and sometimes they don't. But to answer your question, if I were to just ignore them (which we basically did for four years because no doctor knew what I had) they spread, get worse and if left untreated can, will and HAVE turn into very very big ugly tumors on the OUTSIDE of the body (some also form below the surface of the skin). So leaving it untreated is and never was an option. Also if left unchecked, it WILL spread to the internal organs and lymph nodes in the form of tumors (this is the "cancer" that generally makes the most sense to people).

Unfortunately, very little is known about this type of lymphoma because there isn't a large population with it, making it more difficult to study and run tests on (which is why I ALWAYS donate extra blood and skin samples - research may just save someone else's life one day). As of right now, there is NO cure - only maintenance. As yet though, nothing has worked to back it off for any length of time. This latest clinical trial worked for about three months and MSKCC feels it will work again if we need it, but its not something I can stay on long term because of the neuropathy (nerve damage to the fingers and toes). So I spent this morning at MSKCC and they are giving me an arthritis medication called methotrexate, which I guess they found out by accident works on certain lymphomas also.

I hope that this at least gave you a little education and some answers to your questions - please feel free to ask anything, I don't mind talking about it. And no, I don't think your being insensitive at all - its curiosity and that's normal. Trust me every time I go into MSKCC I sit and talk to other cancer patients in the waiting room and we all sit around going "oh what do you have?" and oddly enough, I found that cancer patients have the best senses of humor and all around best attitudes - we learn from each other and we all found that "special" way of looking at life that most people will never have - I think that makes "us" kinda lucky

I do apologize that I didn't make it to Linda's.....I feel terrible. I was stuck on Sunday waiting for my son to get dropped off at home so then figured I'd go after MSKCC today on my way home.....but unfortunately, as I was driving back I got a phone call that my mom (who drove up here from Florida on Saturday) who was visiting friends in New Jersey was rushed to the hospital in Belleville with an intestinal blockage from complications of bladder cancer surgery years ago (that's an education for another day, lol). So I had to rush home and make 1000 phone calls to find out what was going on, then call everyone else in the family and stand by to see if I needed to rush back to Jersey (which I may still have to do tomorrow).....ugh! Merry Christmas