[Russ]

KWJ, A very complex procedure. Thanks for the detailed description. Prayers that all will work well for your Dad.

[Russ]

Dottie, that was quite drop in PLTs – good to see they came up in just a few days and no more bleeding. Can understand the tiredness with HGB at 6.7 but good he’s feeling well. The PRBC tx should help a lot. I end my 3rd round Dacogen today but will not have the Neulasta – instead opted to wait until seeing the doc on Monday and possibly try Neupogen hoping that is milder. Having the Neulasta shoot my WBC up to 50+ seems like a waste of cells since they don’t last very long. Regards,

[Russ]

Thanks Neil, I found out Dacogen was approved by
Medicare for approval on Oct. 1, 2006 so all they need to do is resubmit the charges from before then.

[Russ]

Neil, When I use prednisone, I usually start to taper down right away and then go off of it. I have a little asthma and the prednisone helps with that. Perhaps another steroid would work better for you.

[Russ]

Hi Dottie,
Sorry to hear about John’s problems. You are right on the low point – 2 wks. after the start.
What were his PLTs to begin the 4th round? also
WBCs? I’m in the middle of my 3rd rnd and my PLTs were 122 at the start. My WBCs were 2.45
so that’s my big worry. Does John get Neulasta or Neupogen the last day of his treatment or at all? Prayers and blessings for you both.

[Russ]

Hi Neil, I know you are not a proponent of prednisone but when I did a chart of my CBC
numbers with markers to show when I was on
15mg of prednisone and above there seem to be
an increase in both WBCs and PLTs. I don’t seem to have bad side effects with prednisone – am always careful to taper off slowly. About the worse for me is being “wired” and having an increased appetite.

[Russ]

Thanks for the reply. I called my hematology clinic this morning and they will resubmit. They felt there would be no problem with coverage.
Unfortunately we got the MNC (medicare non-coverage) notice on a Saturday and no where to get answers. At $20,000/mo. it was a scare we didn’t need.

[Russ]

Kathy, Found out later that Dacogen was not approved for pass through with Medicare until Oct. 1, 2006. Suspect it just needs to be resubmitted. BTW, An aquaintance of mine could
not get medicare to pay for Revlimid since it was
an oral thing he could take at home.

[Russ]

Thanks, Dottie. 2 weeks after the start appears to be the low point (nadir). After the 1st round my numbers recovered 2 weeks after the nadir. I suspect the reason the recovery was slower after the 2nd round might be due to the Neulasta I had which used up my good stem cells to make an excess of WBCs (went up t 50+).

[Russ]

Patti, I’m getting pretty close to that 20% number. MDS sounds a bit better than AML, just praying that Dacogen will work for me. After my 2nd round my WBCs and PLTs were too low to start the 3rd so will see what another week will do.
Taffy, Will pray for your aunt – hopefully she is close enough to Indy to check with their IU cancer clinic. Recall they brought Lance Armstrong through his before he won the Tour DeFrance.

[Russ]

Armansa, I understand your grief and anger. Please don’t blame your brother, He could not
have controlled what is in the Lord’s hands.
May God’s grace and love and give you comfort and peace. We don’t know the reason He allows these things to happen but His thoughts are higher than our thoughts and His ways beyond our reasoning. My sincere condolences.

[Russ]

Patti, Does the CLO work as a laxitive? I won’t need that till I start back on Dacogen.

[Russ]

Taffy,
MDS and AML are very close. If you have MDS and your bone marrow blasts go over 30% it is considered AML. MDS is also called “smoldering leukemia” and about 20% of MDS patients go into AML. Don’t know where in IN you are but Dr. Larry Cripe at the IU Medical Center in Indy is an excellent doctor. If possible a consultation with him would be advisable. I go to the Michiana Hematology/Oncology in northern IN.
Best wishes and prayers.

[Russ]

Condolences and prayer that GOD will provide comfort and grace to the family.

[Russ]

Fran, Can’t answer your question but I can pray.
May God comfort and keep you and bring Jim through his ordeal.

[Author]

Posts