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CLL progressing - Bone Marrow Biopsy next - bunch of questions :/

Danib
Posts: 1
Joined: Apr 2015

Hi.  I am new to this group.  My father, whom is 72 has had CLL for 10 years with no symptoms.  over the past 3 months  his platelets are dropping. Now in the 70's.  They want to do a BMB.  My father is not a very good patient and has a low tollence for pain.  Have anyone had them give you Versed and a local?  I asked them fow twilight and they said no.  That is just so unacceptable to me With so many people complaining of pain.  

also any feedback on people having chemo?  They said they would treat with Bendamustine (Treanda) and rituximab.  How will he feel after this.  What can we expect?

last. Anyone use the mayo clinics that specialize in CLL.  I see they have 3 locations.  Thinking of getting a second option.  we are in charlotte, NC but willing to travel for a great refersl.  

Thanks in advance for any feedback.

 

 

Ray002's picture
Ray002
Posts: 43
Joined: Mar 2005

Hi

I had chemo for cll.I was supposed to have 6 treatments i had 3 and cll was gone.That was 3 years ago...no hair loss easy chemo.Good luck#

elaine1983
Posts: 2
Joined: Oct 2015

Hi there,

I am so glad to hear the chemo was easy and am wondering what kind of chemo you had and how it was administered. I am going to have 6 months of Bendamustine+ rituximab with the use of a port, was this your experience? 

MSDT
Posts: 5
Joined: Jun 2015

My husband was diagnosed in 2009 and had his first Chemo with the same drugs you stated in your post (treatment was June 16 & 17) his white cells were 145,000 and dropped to 8500. He had no nausea or vomiting but that is because they gave him meds for that in IV. His blood pressure dropped to 91/59 and the internist adjusted his blood pressure meds to help that. He had some headaches with sensitivity to light and noise,dizziness and light headed ( I think due to blood pressure to low) along with some irritability, just plain old wore out feeling and slept a lot. I kept close watch on him and made sure he ate a lot of protien (Boost High Protein) lots of fluids and Smart Water (brand name) because it has electrolights in it. These symptoms started abou the 2-3 day after treatment. Now he is fine except for still slight headaches that he has learned to live with and I think that it still has to do with blood pressure so we keep a close eye on it. You don't want your dad to get dehydrated and our chemo nurse said eat something every 2 hours especially protein. A steroid was given with treatment also. His lymph nodes were very large along with very high white cells plus a genetic blue print of his white cells showed missing chromosone 11q22.3>>>>so because of nodes, high white cell and blood blueprint, the doctor said now is the time to start treatment. Thank goodness his platelets did not drop below 100 and red cells not affected. I am hoping the next treatment in July won't be such a shock to his system. He is scheduled for treatments once a month for 6 monts ending in November. That is unless doctor changes treatment. I hope this info has given you some help to try and understand, but if you have any other questions you can let me know. Good luck. The doctor said that you never get rid of CLL but you can go into remission and it could take another 5-7 years or more for it to get to the same point that it was now. Hubbys bone marow was not even mentioned but I guess the CAT Scans he had and all the blood word did not show a problem with the bone marrow.

I assume yor dad is seeing a hemotologist/onocologist in North Carolina and that is who diagnosed him? Did they send his blood to a special lab to have the white cells examined? That is how they found my husbands ( in Georgia) and reconfirmed when we came back to Florida and his doctor is connected with University of Miami and so is his internist. Not that really matters but you really have to have faith and trust in your doctors. My name is Dolly and if you would like to email me directly at any time my email is dollyt2@gmail.com.

oldnwizr1
Posts: 4
Joined: Aug 2015

Insist on Verced for the Bone Marrow Biopsy! I have had two and got Verced each time. There is no reason to endure the test without medication. Don't let them try to talk you out of it.

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