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Cancer Treatment in Cuba / Vaxira Treatment trip from US
« Last post by Uriah78 on March 11, 2020, 08:18:31 AM »
I have provided several comments regarding Vaxira (Racotumomab) and my trip to Cuba under relevant discussions. Those prompted several inquiries including quite a few that have since also made the trip or are in the planning process. It seems fitting that I create a discussion to share the results of what appears to be the newest Immunotherapy for advanced adenocarcinoma. And I may be the first from the US to use it. I went from no hope and desperation to NO EVIDENCE OF DISEASE (NED) in four months. My case:
 Stage 1b in 2013, lobectomy lower left lung , clean for 2 years. Recurrence in Feb. and I was diagnosed NSCLC stage IV (solid tumors & mets ) in March of this year. After Radiation in April, and Chemo cocktail in May (6 hrs every 3 weeks), my tumors were reduced by about 50%. Continued chemo but no further reduction by the end of July, so my Onc. said no more chemo since it is no longer working and put me on Avastin maintenance only (45 minutes every 3 weeks) at the end of July. The prognosis was 12-18 months...
I had heard that the University of NY was to initiate trials for the Cuban vaccine(s), and had seen posts in this forum questioning the availability of Vaxira, etc. But not much info about it. I also knew that the political relationship between US and Cuba was improving, but not there yet. As you can probably imagine, with my prognosis, I wasn't too concerned about the political legalities...but more on " how do I get my hands on what may be my only hope"....So I did some research and contacted the Clinic in Habana ...I e-mailed my medical info and was approved contingent on verification of my medical status from the Oncologist there. Two weeks later My husband and I were in Habana via Cancun.....
As specified in their cost estimate and services to be provided doc. that they sent me, a nurse from the Clinic was at the airport waiting for us...took us to the $exchange at the airport - can only use CUCs, cash - and then to the Clinic's reception where we paid for the initial services (approx. $10K). These services included all medical visits, labs, room and board for both of us (3 nights 4 days), and the initial 5 bi-weekly vaccines ...After labs and Onc visit, they administered the first vaccine and was under observation for any side effects. The other four, plus additional monthly maintenance vaccines ( at $1800.00 each) I brought home with me in a small thermal lunch box (must be refrigerated), along with a letter I could present to customs if questioned....
The vaccines are applied with very small needles, I could do it myself but my husband is my best "nurse"....no real side effects to speak of, I had minor headaches (which they told me to expect along with flu-like symptoms) a couple of times, but otherwise OK. The Cuban Onc also told me to continue any treatments suggested by my US Onc. since the vaccines are designed to complement other treatments vs. replace....They also require that you send recent labs/scan results before they approve you for additional vaccine purchases (up to a year's supply). I will be sending them my good news in the near future and hope to go back for more at the end of January
As you can probably imagine, their accommodations are modest, technology (in terms of phones, internet, etc. for regular folks) almost non-existent, but the folks there (from the cleaning ladies to the nurses, to the Drs. etc.) are very professional and caring....There were patients from all over the world when we were there, some had their own translators (Africa, china & Russia). There were some nurses that spoke English, but there is definitely an advantage if you speak Spanish...I just read that we now have direct postal service to Cuba, and also learned that there are direct flights from the US vs. having to go thru Canada or Mexico, so things are improving in terms of accessibility....
 I pray that they fast-track the trials here in the US and for quick FDA approvals as it would prompt insurance coverage & widespread availability-as it should be- meantime I remain very grateful, looking forward to spending the holidays with kids and grandkids, and wishing each one of you Hope, Love and Health as we continue fighting this beast.
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