The Real ME: A Stock Photography Resource for the Media
We’ve all seen them in the news stories about ME/CFS: the guy in a suit at the office, yawning; the beautiful woman sitting at her desk with her immaculate make-up and elegantly coiffed hair, hand to her head and looking slightly pained.
Discuss the article on the Forums.

Non-myeloablative HSCT (cycloP+rituximab+blood stem cells) or just cycloP/rituximab?

Discussion in 'General ME/CFS Discussion' started by pibee, Jan 6, 2018.

  1. pibee

    pibee Senior Member

    I am just beginning to research this topic but I was wondering if non-myeloablative HSCT has at all greater risk than just using rituximab/cycloP alone, and the possible benefit is far greater with long term remission?

    I spoke to Russian team Dr Denis Fedorenko, that have good reputation for HSCT. I sent them my labs
    • Anti-TPO (take treatment for Hashimoto 12 years, my mom and sister too),
    • SS-A (family history of Sjogren (aunt & sister), I still didnt do other tests to see if I have it but lately have a lot of mouth and eyes dryness) and
    • CellTrend (8/9 positive, M4 is 7x above ref range) + my mom has very mild ME (EIPS 8.5/10) for 40 years, non-progressive
    and he looked at that and said I can come for HSCT... (which of course i'd leave for the last option if all else fails (like antivirals, mHBOT etc.).

    THey sent me a brochure, seems like they're s using quite smaller doses of cyclophamide than Fluge & Mella (?), and they use it only before HSCT, later rituximab (some versions are with cyclop later too and not rituximab).

    part of the brochure:

    upload_2018-1-6_8-58-41.png upload_2018-1-6_8-59-21.png
    Last edited: Jan 6, 2018
    Frenchguy and ScottTriGuy like this.
  2. rodgergrummidge

    rodgergrummidge Senior Member

    Hi @pibee NM-HSCT carries significantly more risk than Ritux/cycloP. There is significant mortality associated with NM-HSCT while deaths associated with Ritux/cycloP are rare. Each person in the context of their disease needs to consider the benefits and risks.

    On what basis do you judge the Russian team to have a good reputation?

    I'd be seriously concerned if a doctor recommended a NM-HSCT without a serious face-to-face discussion on what is involved and the potential dangers.

    NM-HSCT is a serious undertaking. Brochures are fine for deciding on a holiday destination, but not for a heavy duty medical procedure.

    Did the brochure outline:
    • the death rates from NM-HSCT?
    • the incidence of Graft versus Host Disease?
    • the possible risks of graft rejection and their frequencies?
    • the different cytopenias that can arise from NM-HSCT and how long you would stay in hospital while they are treated?
    • their obligations to you if complications arose 6-12 after NM-HSCT and what would be the costs?
    • how are HSCT donors identified? How are HSCT donors screened for diseases?
    in order for a patient to provide informed consent for a NM-HSCT, the providing doctor has to carefully lay out all the benefits and risks involved. Given the potential risks with NM-HSCT (which include death), the treating doctor would need to sit down with the patient so that they can fully discuss all the potential risks so that informed consent can be provided by the patient. A second opinion should always be obtained if the patient remains undecided or is not clear on any of the issues.

    I am not qualified to provide any specific medical advice in this case. One approach in trying to decide might be to consider the worst possible outcome of NM-HSCT and compare it to your current prognosis with other treatments. For example, a 60 year old with leukemia who is not eligible for chemotherapy and/or an allogenic HSCT will die if left untreated. Their options are limited to i) pallitive care, ii) experimental medicines as part of a clinical trial or iii) NM-HSCT. Many such patients (not all) elect for a NM-HSCT because the alternative treatments are almost certainly death.

    Learner1, pibee and ScottTriGuy like this.
  3. pibee

    pibee Senior Member

    Of course brochure contains all that, why would you think otherwise?

    I know we all read thousand of pages about ME etc but i dont see a problem with a brochure because usual autoimmune patients still remain laypersons for medicine and need more approacheable guide. What should such facility send me? PubMed Links?! :D

    Death rates depend on the provider of the procedure, I heard in video interview he said they had 1 death case in 15 years but I didnt research yet.

    They handle many MS patients, I got recommendation via FB group and a person who webt there for scleroderma.

    Can you send me source where it says death rate from NM-HSCT (cyclophosphamide) is higher than cyclo alone?
    I usually ran into 0.5-1% risk but depends on the facility

    It is weird if you consider that in Germany blood stem cells are frequently done by not even doctors but heilpraktikers. even bone marrow stem cells are now sone in Germany as outpatient procedure. ( I am not okay with this, just to be clear!!!)

    In Russia it is 21 days in-hospital stay.
    Price is $40,000 and covers post-Hsct Rituximab, but I dont think price should be factor for so big decision so I am not considering this part.
    They still give rituximab few months after HSCT, says its within the cost and if extra things are needed is usually up to $1000.

    Donors??? What freaking donors are you talking about?

    Its your own stem cells.
    Last edited: Jan 6, 2018
  4. jpcv

    jpcv Senior Member

    SE coast, Brazil
    She thinks you are talking about allogenic stem cell transplantation, not autollogus sct.
    200 mg/kg cyclo is not a low dose.
    Cyclo in Fluge /mella study is administered at 600mg/m2 ( body surface area)
    For example
    -70 kg person/1,73m body surface area = 1,8 m/2 Dose = 1080 mg
    -70 kg person 200 mg/kg = 14.000 mg
    So a person like me would receive more than 10 times the regular dose of Cyclo!
    Not an easy task, I´ve followed a few patients who were submited to autollogus SCT and the toxicity is importante.
    pibee likes this.
  5. pibee

    pibee Senior Member

    @jpcv , wow, that explains it. Lol. :eek:

    Well, maybe if i get even more desperate ...

    From Fluge & Mella study:

    So not even 6 x 700mg/m^2 infusions equal what you get with NM-HSCT in 4 days. :-/

    I've noticed . Weird, I think only autollogus is done for autoimmunity anyway
    Last edited: Jan 6, 2018
  6. pibee

    pibee Senior Member

    Part of the brochure:

  7. Frenchguy

    Frenchguy Senior Member

    Hi PIbee,

    Did you try immunosuppressive drug to see the effects?

    What are your symptoms ?

    Your blood results point to an autoimmune dysfunction. I know the Sjogren fatigue is very important... maybe antiviral trial in your case is not the treatment of choice given your antibody results,

    pibee likes this.
  8. pibee

    pibee Senior Member

    @Frenchguy, I am actually on Valtrex and it is definitely saving my butt from my recent progressions because of some fuckedup treatments.

    from immunosupressive drugs I tried only high dose vit D which is listed as immunomodulator but my experience is not so. I cant get anything else in Croatia. I also took hydroxychloroquine (Plaquenil) as part of Lyme treatment, and dont remember anything about it.
    Btw, my fatigue is def ME not only Sjogren's, it's too severe.

    at first the result of high dosse vitamin D , was miraculous I felt least fatigue in last 15 yrs ( I got ME when i was 11 or so, but until 2005 was 9/10, and then 7/10 until now... i am far from severe but stilll have very annoying brain fog and many congitive limitations, severe sleep disorder that's probably biggest reason for my inability to get full time job, and also some psyhcomotor problems and extreme sensitivity to showers for unkown reasons -probably skin sensory overload).

    anyway vit D was at first miraculous but made me vulnerable to viral infections so i dont buy that high dose is immunomodulatory, maybe if you're on it long long time , takes time to level out, but for me did me damage via herpes virus reactivations (working hypothesis)
    if I know how strong it is maybe i'd stay on lower dose and avoid negative side effects..

    now almost 8 weeks on Valtrex, I went to 5 parties in 20 days, few times cinema, coffee, traveled for New Year to other side of country, I crash each time for few days after few days of activity (which is still worse than 1+ yr ago) but def much better than until recently. I am still laying all day at home if i'm not out of the house.

    I think I have herpes reactivations - although I cant test even that in this shithole Croatia - but even attacked my speech so maybe Valtrex is affecting recent progressions and not the stuff 1+ older. We'll see.
    but when I look back at 2005 when I had my huge attack (many psychiatric issues next to Hashimoto and ME progression), it was herpes viruses I think - got Bells palsy, trig neuralgia -so it attacked my cranial nerves. Bells palsy was atypical so I dont think it's from Lyme.

    I was treated for 1,5 year with antibiotics for bartonella and lyme, with mixed results. def no response in ME/CFS symptoms (Except not lasting improvement on bactrim and IV ceftriaxone) but my psychiatric symptoms (PANS/PANDAS) and neuropathies were greatly improved.

    ... But yes in general I agree with you that I have very strong case for autoimmunity, just dont have (m)any available treatment options.
    Also I test positive for everything under the sun - mold illness, heavy metals, KPU, lyme, autoimmunity, which makes it very hard to decide which test is relevant and which isn't.

    I guess like most of us I have a mix of immune deficiencies (thus herpes vulnerability) , autoimmunity etc.
    I am very drawn to HSCT and often times desperate enough to do it.

    p.s. sorry for chaotic post, edited
    Last edited: Jan 7, 2018

See more popular forum discussions.

Share This Page