Radiation of the speen
January 3, 2008 at 3:46 pm #19946
I have not read of anyone having enlarged spleen radiated, the search engine is not working now.
I just spent 21 days in the hospital. One of the things then did was give me four radiation treatments for my enlarged spleen. It reduced the spleen and brought all my counts to near normal ranges (for how long is the question), my whites dropped from 52 to 15, platelets increased from 60 to 100. I was in the hospital for severe shortness of breath and low O2 counts, suspected blood clot or pneumonia. I was treated with antibiotics and steroids which seems to get breathing back to normal and off the O2. what a way to spend Christmas and New Years.
JackJanuary 3, 2008 at 5:54 pm #19947
I’m glad the radiation brought your counts back to near normal. That is certainly encouraging. I am so interested in your post because that is the next step they are considering with Dad. He has been on Revlimid for about 4 months now. It hasn’t done much that we can tell so far. His white count keeps going up. It was 79 today, so they upped the Hydrea he is taking. Dad saw a doctor at the Med Center in Omaha in November. He suggested Dad stick with the Revlimid. He said when the wbc gets too high we can knock it back down a bit. He said if it didn’t appear that the Revlimid was doing the trick that radiating the spleen is the next thing to do. Dad is supposed to be hearing from a radiologist soon.
Can you tell me a little more about what Dad might expect? I hope things continue to go well for you. Are you still on the Zarnestra?
ShariJanuary 3, 2008 at 6:08 pm #19948
It regards to radiating the spleen, it was nothing, I have has a little nausea, thats all. My whites went down immediately, how long they stay down is the question, It did lower my HBG and I needed 6 units of blood. They radiate, then check counts and xray the spleen before next treatment to ensure counts don’t drop to far. I will continue my Zarnestra trial in the mean time..
I think you already know that I also go to the Med Center in Omaha for my Zarnestra trial, my hospital stay and radiation was in Des Moines.
JackJanuary 3, 2008 at 11:22 pm #19949
Did your red count recover after the transfusions? Between the Hydrea and the Revlimid, Dad’s needed several transfusions over the past few months. Did your spleen bother you much? Dad seems to think when his wbc gets higher his spleen bothers him more. Were they able to give you any indication of how long this might keep your wbc in check?
Dacogen has been mentioned again. I am inclined to think that since the Vidaza worked so well for Dad, maybe Dacogen would have a positive effect. We all so hoped Revlimid would be the magic pill. It hasn’t done what we hoped. I’m not sure how long Dad should stick with it. The doctor in Omaha said it can take several months, but it sure is hard to be patient.
Best wishes to you,
ShariJanuary 3, 2008 at 11:49 pm #19950
My reds did recover after the transfusions, these were the first transfusions I have required. I get my counts checked next week and will let you know how they hold, over the long term, who knows, they just guess.
I agree with with your Dad, my spleen bothered more as my whites increased. I am pretty tender there and all around that area, I had a massive amount of quick water weight and loss around the mid section, about 26 pds which confounded things.
We are all so different that one size just does not fit all. Keep me posted on the Revlimid, that may be my next option if the Zarnestra fails.
JackJanuary 9, 2008 at 2:15 pm #19951
Dad had his first radiation treatment on his spleen yesterday. The radiologist we saw really talked like the procedure is a piece of cake. They are planning on doing 4-6 treatments.
They are about ready to give up on Revlimid. It doesn’t appear to be doing much, although they are sending off a bunch of blood to see if there have been any changes. The doctor thinks it would be a good idea to stick with it during the radiation treatments and see if there is any change after that.
How were your counts this week? Hope you are doing well.
ShariJanuary 9, 2008 at 10:35 pm #19952
My reds were back to normal, whites were 28, platelets were very low for me, 25. I go to Omaha tomorrow and hopefully will get back on the Zarnestra. No problem with the spleen, my appetite has returned and stomach is much better, I had a slight nausea feeling for a few days. It’s funny, now that my spleen is down, I can see how enlarged my liver is, they were an even match, it gives me no problems.
give your dad my best.
JackJanuary 24, 2008 at 7:09 pm #19953
I was just wondering how your counts have been holding? Dad just finished his 6th radiation treatment. His wbc has dropped from 81 to 5, which we are all feeling good about. I think he is on his 3rd or 4th transfusion today. He has needed rbc about every 3 days now. His platelets were down to 9 this morning – an all time low for him. Is this to be expected? I know yours got down to 25 – did they rebound somewhat when the treatments were over?
Dad’s blood work came back. The -5q is no longer detectable. Dad’s doctor seems encouraged by that. He says the Revlimid must be doing something. He thinks it may just take more time before it improves Dad’s counts. He also did another test to see what other treatment options Dad might have.
Dad feels considerably better. His spleen has shrunk a great deal. He said he thought he felt pretty good today, until he saw how low his hgb and plts are.
Did you get back on the Zarnestra?
ShariJanuary 25, 2008 at 6:19 pm #19954
Last week my platelets dropped to an all time low of 13, and whites dropped to 5, this week they were 24 and 5.4, so that is a good thing. I had a BMB yesterday and will have results on Monday. My HBG has returned to normal, my monocytes have also returned to normal. It is a nervous time for me right now, my platelets have never been this low and hopefully they will continue to increase. This is always a roller coaster. My spleen feels great
They will not allow me back on Zarnestra until my platelets go over 50. I have been of it for 8 weeks. Tell your Dad to be patient in regards to the counts, it will take time, that is easy for me to say, considering I sit here every day and fret about my own counts. Good news about the -5q. remember that my rad. treatment ended 4 weeks ago, so it does take time and we all respond differently.
JackJanuary 25, 2008 at 7:52 pm #19955
Thanks for letting me know what you are experiencing. I don’t like Dad’s platelets getting so low. It appears from your experience that it isn’t unusual though (at least it happened to both of you). Good news about your wbc and monocytes. I will be interested to know how your BMB turns out. I be thinking of you and wishing you the best.
ShariJanuary 26, 2008 at 2:11 am #19956
I find the lack of response interest in this post surprising, I quess I shouldn’t, it was the same when I posted about zarnestra. I think it is time to find a new web site. I will e-mail you the bmb results.
JackJanuary 26, 2008 at 3:21 am #19957gemloyearMember
Hi Jack, I do find your posts interesting, even though I haven’t responded to them. I so wish that my husband could have had radiation on his spleen instead of a spenectomy. He had the surgery before his ITP evolved to MDS and then AML. It seems that was when he began the downword spiral. As a result of the surgery he had a brain bleed (stroke) a short time later and then an incisional hernia. If he had not been such a strong man the surgery would have killed him. I think you were very fortunate to have chose the radiation therapy.By comparison I think that you are doing surprising well. Even though we lost our battle I do appreciate reading of others who are suceeding with their choice of treatments, ie. the zarnestra as well. By the way Terri’s husband Bob also chose radiation for his spleen, she hasn’t posted much lately,so perhaps she hasn’t seen your posts. I’m glad that you have responded so well,wishing you the best.
Glen 72_ Dx RA, ITP,2002,COPD 2002,MDS 2004, AML 2005,Passed Oct.05,2006 age77February 12, 2008 at 4:59 pm #19958TeresaMember
Congrats on your counts. I hope that you continue to get better. I have not been on the site since Aug. I took Mom to OMA for check-up and to find out why she was in and out of the hospital all summer with fevers. We found out (unfortunately to late) that her gallbladder was rotten and she had congrestive heart failure. Why this had never been pick-ed up at our local hospital, I will never know. Maybe it just wasn’t meant to be.
We finally got Mom strong enough to handle the gallbladder surgery after 2 wks of antibiotics. She did really well for 48hrs, then everything started shutting down. She ended up with bacteria in her port. We gave Mom back to the Lord on Sept. 29.
I had talked to you several times about Zanestra. We were going to give it a try once Mom got stronger.
Please do not leave the form. Trust me, alot of people do read and research the options that people such as yourself post. Not all of us respond to the posts though.
I do wish each and everyone of you and your family members affected by this disease all the luck in the world. I hope at some point in time we all will be able to read post after post saying that there is a cure. In the mean time keep up the fight and the flow of information.
TeresaFebruary 13, 2008 at 4:03 am #19959poppyshopeMember
Jack, I am sorry that your platlets are low , but it seems that you are tolerating it and a lot of times they don’t transfuse if you are not under 10,000 or of course if there is bleeding. I have read that Pineapple can help with Platelets- check with the doc but worth a try. Please don’t leave here your posts are invaluable!- JenFebruary 13, 2008 at 4:01 pm #19960TeresaMember
This applies to anyone else with low platlets. If you are having problems with bleeding, take alfalfa pills. It really helps with the clotting.
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