Laurie - hope this cycle goes at least as well as the first.  Actually I hope it goes 100%....no... 1000% better than the 1st with zero, zilch, nada, NO side effects whatsoever!  Everything I have at least 2 of I'm trying to cross for you and yes some areas cause considerable dicomfort doing that but you're worth it, sweetie!  lol

How many cycles are they talking?  I know you must have told me at some point but for the life of me I can't recall!  I'll know more after tomorrow on how many are in my future.  Have my local onc appt at 10 in the morning and hopefully my notes from Tucson are in the file.  Still planning on "holding out" til after the new year.  Need to get a couple more non-cancer things taken care of before we start the Benda-dance.

Hugs!!

Sharon

Hi All,

Just checking in with the latest Treanda news from my husband. He was meant to start stem cell harvest last month but ended up in the hospital with febrile neutropenia. Then he had to have his wisdom teeth out and during this time the tumors started to grow back. So they decided to give him round four of Treanda last week, even though his white blood cell count was low. I guess you could say that he is stuck in that hard to treat place. He had to have more chemo but the more chemo he gets the worse his white blood cell count  gets. Last week was his nineth treatment since January. So now they don't know about the autologous stem cell transplant. He is worried because why would you take stem cells that aren't working right just to put them back in. I know we still have the option of an allo transplant but the indecision and waiting are hard, as you all know. Anyway if anyone has any input about Treanda and neutropenia and transplants in general I would love to hear from you.

The Treanda seems to be wiping him out this time, but it could just be all that is going on. It is working on the tumors however.

Laurie I hope your second round went without a hitch.

Greg, thanks for all the hardwork and info. You provide a wonderful resource that I have come to rely on. I think I've read every word posted!

Take care everyone,

Jen

Continued- sometimes with too much info I lose it all. ???? Lead Oncologist also agree to a wait and see future on the BMT or SCT until after the fluid is finished, the heart sitaution is reviewed also need a MUGGA and the PET scan has results. They are very thorough at MSKCC. Generally feel ok except for the altered breathing at times. The diuretic is working fine. Once again both the Lead BMT and Head Oncologist stressed that either transplant for a 62 yrs old male is High Risk. Not totally sure that some more chemo might help but I may have passed the point of no return with the positive effects of chemo.  Let's keep in mind I have now in lare Oct begun my 11th year as a Victor Veteran. And who am I to complain. To date have stayed with MSKCCfolks 100% but and getting thoughts of perhaps a 2nd opinion and from another hospital although my gut says they are the best.

RE: the Auto and stem cell removal in his condition-I'd be very concerned about putting tainted cells back into my body unless they have been banked or extremelt filtered. Even with the allo option and with an unrelated third party donor with a 9 out of 10 marker basis and to a less extent a SCT-there is the great-grave chance of GVHD and all its complications. It's staeting to get VERY tricky and complicated. Get as much info as you can, check other resource boards, speak to your Patient Coordinator perhaps they can put you in touch with a similar successful patient- they will contact them and perhaps the patient will call you to discuss things in common. Perhaps a 2nd opinion may be warranted. All Oncologists are NOT alike.

Hope this HELPS!

All the best.  My thoughts and prayers are with you both.

Ed

1erm2005@optonline.net (914) 779-7453

Hi Ed,

Wow, with all that you are going through I really appreciate you taking the time to give me advice and kind words. I guess we have a lot of decisions to make. We have six kids ranging in age from 27-7. I assume that my husband will be willing to try any type of transplant in the hopes of a remission for their sakes as much as for his own. Even understanding the risks, his cancer is so aggressive it seems we are left with little choice. The head of the BMT team is the third oncologist to treat my husband. She was brought in as a "Super" Specialist in the field. I think the best we can do is become as informed as possibe as you suggested, in order to make the decisions as a team and not be steered blindly into anything.

Well, the saga continues!!! Happy Thanksgiving to you all.

Happy Birthday Laurie!! Thanks for the great tip about the Claritin!

Thanks again for the support Ed.

Take care,

Jen

Jen,

If you don't mind may I have your personal email address. I would at times like to communicate outside the community, if you don't mind. BTW, what is your husbands name? I'd like to add him to my prayer list.

Third Oncologist eh!! Is she part of the local team or somebody special they have brought in for  cases like your? I'm now dealing with 2- the lead Oncologist and the BMT Team assigned Specialist.  Funny thing, most of my Oncologists even since day 1 in 10/2002 have been females. From a male perspective I have found that they are VERY knowledgeable, VERY direct, no nonsense and in my case a combination of wise sage, grandma and even a mother at times. Though i have NOT been scolded or repirimanded I was initially put on notice bthe BMT gal. Somewhat age contemporary. The guys on the other hand, though competant can be a bit stand offish and not as thorough as the gals. Like Avis, (vs Hertz) the gals over their long careers (in the mostly male dominated era of the 1970-1980's) have had to at least try to compete with the good ole boys club. I actually find it kind of refreshing. My gals are tops

No THANKS are ever needed. You stay strong and tough in this battle as care giver. But, remember, Jen, YOU need some occasional and perhaps even more so now, "JEN TIME" for yourself. You cannot be the BEST YOU, wife and mother IF you are NOT as whole as you can be. You need to allay your fears, even though they may be real, and find a good friend, confidant to either listen, hold your hands, pray together, scream out, yell, rant, rave, to releive the built up stress of this VERY REAL SITUATION, or even have some quiet time, DAILY.  And NO it's NOT being selfish- YOU need this girl friend. For YOU!

This is an oldie but a goodie:

"God grant me the serenity to ACCEPT thge things I cannot change;

The COURAGE to accept the things I can;

And the Widsom to KNOW the difference.

and one of my favorites-

"Be STILL and KNOW that I am there!"

Now go and take a few minutes for YOU!!

Ed

1erm2005@optonline.net (914) 779-7453

Way to go Peanut59,

I have as I mentioned in recent post 4 rounds of Benda- within the last month been filling up with fluid about 10 lbs weight gain-and it's NOT from over eating. My carbs daily allotment assures me of that as per my Endocrinologist.

FYI- for those who may have these sighns of perhaps post chemo occurrences, the Pulmonary guy has me on Aldactone 25 mg 2x daily (since 11/18) and the Oncologist has me on Prednisone 5x daily along with Allopurinol 300mg 1x daily (since 11/25); the last two days I've lost at least 7 lbs of fluid- was 243lbs before all this, went up to 256 lbs (fluid) and now this am 248 lbs. The bloating has subsided, I'm breathing much better, less caughing up 'Green' sputum, but some mild diahrrea.  Will see Pulmonary guy next week, also Endo-gal and also have a Mugga for some Oncologist concern for my heart. The last time I had a Mugga in 2001 was post the initial R-COP. So we'll see.

Basically, feel GREAT today with much improved energy level. Will also get blood results from last weeks blood tests and PET scan. Although the preliminary PET scan did indicate some new tumor volitility in chest, neck, abdomen and pelvis.  Where are in a watchful waiting period until this heart and fluid situation clears up.  The good news is as per MY plan I'm home with my honey for Thanksgiving and also plan to be there for Christmas and New Year's.  So I'll just LIVE my life, enjoy it and NOT think about all the what ifs!! AMEN

Hope yas all had a GREAT Thanksgiving- esp. Burt.

Until next time-- this is WKRP signing off.

Ed

1erm2005@optonline.net

Hi Ed,

My husbands name is Andy. I don't mind if you e-mail me.

As far as a Treanda report goes---  treatment number four made Andy extremely neutropenic. His ANC dropped to .375. The strange thing is that he had his blood drawn six days after a Neulasta shot. Luckily, although it doesn't sound too lucky, the shot kicked in, he experienced some major bone pain, and his counts went up. We'll see what this week brings! Hopefully we'll figure out where all this is headed.

Take Care,

Jen