rachel2000's Cancer Blog
October 10, 2009
Let me start off by telling everyone that physically I feel good. My appetite has been great and I’ve gained weight over the last two months that I’ve been on Lenalidomide. I’ve felt perky, painless, restless, energetic, have no Hodgkin’s side effects, blah blah blah…
Imagine my surprise yesterday when my doc told me that the tumors have been growing and that she wasn’t entirely sure what the next treatment should be, but the Lenalidomide was definitely not working. There are no treatments or trials left at Siteman Cancer Center for Hodgkin‘s, save for some uncouth drugs used for Non-Hodgkin’s- no guarantee they would work for my cancer. I basically left the office without a plan, and that is an awful feeling.
Thankfully, the internet is a wonderful tool, and Terry and I have been doing our research to find any promising clinical trials out there. The good news is that there are several in other states. The bad news is that I have Medicaid through Missouri, useless in the rest of the country. We will have to pay out of pocket.
MD Anderson in Houston seems to have the most promising trials for Hodgkin’s and I qualify for several of them. However, they will not accept the scans, biopsies, and the like from Siteman as they have different protocols. I would have to redo all of these tests. They were so polite to us, but the bottom line is that since I have no credible insurance we will have to pay $41,500 up-front as a down payment, with no option of a payment plan or financial aid through their facility. Once in a clinical trial, though, treatments will be free.I have a wonderful family, and they have managed to raise about half of what is needed (thankyouthankyouthankyou). That still leaves a large hunk of money to raise. I am hoping to raise this by the end of the month so I can make sure not to miss trial enrollments and so the cancer doesn‘t have time to spread. If anyone reading has any knowledge of charities, organizations, or even generous wealthy folk, I would greatly appreciate any suggestions.
This is a huge blow to me and my family. At 24, I should not be worrying about these things. I am still convinced there is a drug to cure my cancer, as scientists have been doing some cool stuff lately with Hodgkin’s treatments. My oncologist has faith in the clinical trials at MD Anderson and said they would probably be my best shot at recovery. Like I said before, I am physically feeling good and my tumors are still pretty small, so I have time to gather a plan together. I don’t want to put on a brave face and lie that I feel fine, but truly I have not lost hope.
Take care, all
Rachel
I’m so sorry your treatment is not working. I had a similar conversation with my doctor at MDA a couple of weeks ago…the tumors are growing and the trial drugs did not work. I hope you get to have treatment there though…it IS the best hospital for trials, I think. They just have more going on there…more to offer.
Hang tough…not having a plan is probably the worst feeling ever! You want to feel you are moving forward. I will pray that you get the funds to travel to Houston and get into a trial that will do you some good.
Take care.
Teresa
Posted on I agree you should be looking for money to go to college or buy a house but not save your life. I agree with Teresa as both of us have had our MDA experience, if there is something that will work they know about it. I also went through redoing all my tests because they want their own to work from. Please know your in God’s hands and you have people praying for you all over the world. Sharron
Posted on hi, rachel. i am so sorry to hear that your current treatment is not working. damn cancer! if i were rich, i would give you the money to go to texas and get the treatment you need. i wish oprah would see this blog and offer some of her millions or billions of dollars to help. or donald trump or someone like that who has more money than they could possibly ever spend. anyway, i am praying for you everyday. hang in there and keep the faith. debby
Posted on Do you have a Paypal where people can donate? Are you doing any fundraisers in your community?
I have a blog with 300 followers and also know two women who have blogs with 1000’s of followers. I might be able to get a post up about you there, if you have somewhere to donate?
Maggie Mae-
I don’t, and actually am not sure how to set that up. I’ll try to hunt it down in this website, or perhaps someone will read my comment and point me in the right direction? It feels weird asking for money from people who are basically walking in my shoes themselves. Oh, to be an heiress!
Posted on I meant Maggie May, I’m sorry!
Hi Rachel,
Thank you for you comments and support. I realize you are going through a lot right now, and the last thing you need is somebody preaching at you. I am sending you the list of the absolutely essential 15 supplements that should be taken in conjunction with any of the treatments you have endured. I get carried away with my supplements. I personally take 28 every morning. You don’t have to get that crazy though. Also, please have some cereal or oatmeal prior to taking the supplements. It will allow for better absorbsion, and you will avoid nausea.
One last thing…DO NOT BUY RETAIL…ALWAYS PURCHASE THIS STUFF ONLINE. There are a million different sites. The supplements I listed come to about $1.50 per day when purchased online.
Here is the list;
Calcium
CoQ10
D-Limonene
Echinacea
Goldenseal
Mangosteen
Omega 3 Fish Oil
Pau d’arco / Lapacho
Perilla Oil
Selenium
Spirulina
Resveratrol
Tocotrienols
Turkey Tail Mushroom
Zinc
Love, and God Bless!
Larry
Posted on 
Thanks for your support - 
