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Leukemia Research Foundation

lindary's picture
lindary
Posts: 710
Joined: Mar 2015

We have a group in Chgo called teh Leukemia Research Foundation. There web site is  http://www.allbloodcancers.org

The members are medical professionals from the various university medical centers in the Chgo area. Today I went to their anual conference on blood cancers. I had to get up early but it was worth it and it is free. I would say that the majority of the 20 min talks were related to transplants. One of the presenters was Dr Linda Burns from Be the Match. 

They did have on talk about "Evolving therapies for elderly patients".  This was interesting in that they stated they really don't go by age any more to determine if a person should get therapy or a transplant. Other factors are used to determine if a person is a good candidate for treatment and which treament. The talks are going to be posted on their web site by Memorial day. I'll pdate this post when the conference is posted. 

 

 

 

hopeful lady
Posts: 36
Joined: Apr 2016

I am glad to hear that age is not a detriment for candidacy for stem cell transplant. I will need one and our big cancer hospitals in North Carolina will not do them on me because I am 60 years old. I am going to the Mayo Clinic after this round of chemo.

 

I am so glad to hear about your journey. You have given me hope. I have 95 percent bone marrow involvement with Waldenstrom's disease. 

 

My thoughts and prayers are with you.

 

Dianne (Hopeful Lady)

Mary from NJ's picture
Mary from NJ
Posts: 60
Joined: Apr 2016

Hi Dianne - if it doesn't work out for you at the Mayo Clinic, other options may be to check with Johns Hopkins in Baltimore, MD or UPenn in Phila, PA. -Mary

hopeful lady
Posts: 36
Joined: Apr 2016

Thanks Mary!  Still a few treatments away from meeting with stem cell specialist.  Hopeful they will not turn me down if the chemo helps at all.

 

lindary's picture
lindary
Posts: 710
Joined: Mar 2015

There was a woman at the conference last Sat who had Wldenstrom's. She had a bad time through treatment and SCT and everything. She said the Dr thought she was going to die a couple of times but she pulled through. I think she said she had been in remission 2 years now. The Chgo university medical centers are also good. 

hopeful lady
Posts: 36
Joined: Apr 2016

When I get through my first chemo rounds, I will visit a center for stem cell transplant.  I understand that there is a possibility that chemo will not tough my 95% bone marrow involvement although my numbers look good and I am very healthy otherwise with no other conditions.  I read from one these chats that someone asked the team if they could work with Waldenstrom's with 75% bone marrow involvement and they said they could work with 105% bone marrow involvement!  I had to laugh!  Made me feel good! 

I admit I do not totallly understand this process but I am plowing through day by day. 

Did you take Rituxin?  I can not remember if you did or not?  These chemicals are all new to me.  I hate medicine and I was never one to take anything but a Tylenol or antibiotic if needed.  This hammering of meds has really messed with my digestive system.  My chemo nurse keeps running the Rituxin faster and I have asked them to slow it down.  This time I got a little more bone pain from the treatment.  I am going to demand my patient right to ask for slower infusion...... from my research and from hearing from others on this site, that seems to help. 

 

My hot air balloon ride is this Friday evening.  I am excited. My coworkers are taking me!  We are going to have a blast.  I want to do things out there and see the country more.  I have traveled most of my life so I do not feel that I have missed much but I just want to see everything now. I know I may not feel like it, but as long as I do, I want to go. 

 

I truly hope you Memorial Day weekend is great and that you have time off from work to do things you want to do.  I have always taken care of everybody and I find it hard to take care of me, but I am learning to be kind to myself and realize that I deserve the care.

Happy Holdiay to you and yours and may strength follow you today and always. 

 

Dianne

 

 

lindary's picture
lindary
Posts: 710
Joined: Mar 2015

I had a Rituxan treatment last Tues and paid attention to how I felt afterwards. I did notice that my restless leg problem from the high does benadryl seemed to take longer to go away. The whole process (blood test, typenol/benadryl, Rituxan and flush) takes between 4.5 - 5 hours. I made sure I drank at least a liter of water that day and the day after. The only "problem" was I did feel more tired that usual. I did have some pain in my lower back but I do have a couple of discs that have been descrobed as degenerative. So I am not sure if the back problem is from the Rituxan or from sitting so long. 

In your case i would definitely insist that they slow the process down. If you can get them to do that at least 2 times in a row and you still have the bone pain  talk to your dr. I could be the cumulative result of the treatment and not how fast they give you the Rituxan. 

I hope everyone has a great holiday weekend. Take time to remember those who served that are no longer with us. 

 

hopeful lady
Posts: 36
Joined: Apr 2016

Thanks for sharing your experience.  Since I do not know what to expect (who does) I really just have to go by each treatment.  I really do not have much to compalin about... so far, I recover nicely and do a lot so I am happy!  On a good note, I joined the International Waldenstrom's Foundation and they sent me so much information on my strain of lymphoma.  I have spoken to others who have had wonderfully long remissions with the newest drugs.  It sounded so much better than what I had heard. 

I had never read of Rituxin maintenance after chemo combo until being on this site.  I hear it a lot now.  So glad you guys share.  It helps me a lot.

I am on the east coast so it is a rainy weekend from the Tropical Depression coming on coast.  I have had an opportunity ot organize my cancer notebook though (sounds boring even to me)!  LOL!  It is quiet in the house and I love that!

 

Hope you are doing well!

 

Dianne

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