A website to provide support for people who have or have had any type of cancer, for their caregivers and for their family members.
Page 79 of 80 FirstFirst ... 296977787980 LastLast
Results 781 to 790 of 798

Thread: One haploidentical transplant experience (ongoing)

  1. #781
    Experienced User
    Join Date
    Jan 2015
    Posts
    61
    I feel my port is like a badge of honor, a good luck charm and my best friend. Iím supposed to get mine removed too but had to postpone to recent increase in steroids. I was actually kind of happy about getting to keep it a while longer.

  2. #782
    Super Moderator Top User po18guy's Avatar
    Join Date
    Feb 2012
    Posts
    9,751
    Hey Alison, good to hear from you! Next available Monday, it's coming out, as it is worn out and no longer needed. The trick will be snagging it from the doctor so that it may take a spot beside my Power Port in my shadow box.

    On the other front, Jakafi (Ruxolitinib) has been approved by my insurance, but only through their pharmacy. Hmmm. They will call with the co-pay, which is not a good sign. However, we have met our deductible for the year, so who knows what will come to pass? And, who on earth came up with the name Jakafi? To me, sounds like a marsupial that you would encounter in the Aussie outback...

  3. #783
    Experienced User
    Join Date
    Jan 2015
    Posts
    61
    Thatís a really bad name! I hope this new one works. They need to find a breakthrough drug that fixes GVHD.

    Or maybe they should make cord blood donation mandatory. A lot of lives could be saved.

  4. #784
    Super Moderator Top User po18guy's Avatar
    Join Date
    Feb 2012
    Posts
    9,751
    Quote Originally Posted by Alison60 View Post
    They need to find a breakthrough drug that fixes GVHD. Or maybe they should make cord blood donation mandatory. A lot of lives could be saved.
    Very true on both counts! I suspect that the day is coming when cord blood will be routinely stored, unless CAR-T or CAR-N/K renders transplants obsolete.

  5. #785
    Super Moderator Top User po18guy's Avatar
    Join Date
    Feb 2012
    Posts
    9,751

    'Hurdling' through time and space, or getting JAKed?

    On October 26th, we made a few changes and decided to take a different course. Both ECP and Kadmon 025 were stopped. Of the three options which remained (Ruxolitinib, Ibrutinib, Methotrexate), it was deemed best that I try Ruxolitinib, aka Jakafi, a JAK2 inhibitor class drug. Insurance approval was sought, but a substantial co-pay was suspected, as well as resistance to approval in the first place. Fortunately, SCCA persuasion prevailed and the approval came. Since we had been making co-pays all year and had met the yearly deductible, there is no co-pay for this rather expensive new drug ($12,500-$14.500 per month).

    Fine so far. Well, insurance would cover it only via their preferred pharmacy (CVS), rather than the SCCA pharmacy. This meant that the prescription, which had been filed with the SCCA pharmacy, had to be transferred to the correct sub-division of the CVS Specialty pharmacy. The next hurdle was when a CVS Specialty pharmacist found a potential interaction/incompatibility with the Protonix (proton pump inhibitor/PPI) that I was taking, inasmuch as reduced stomach acidity "might" reduce the bio availability of the drug. It was suggested that I switch to Zantac (I note here that Zantac is much much cheaper than Protonix). After enduring the phone tree and finally speaking with a live pharmacist, we discussed the issue. OK so far.

    I called one of the SCCA pharmacists (who routinely asks me if there is anything new I'd like to try) and told him of the concern. His reply was "What? I've never heard of that!" I was immediately struck with a sense of shocked lack of surprise. He checked with a senior SCCA pharmacist and called back later to advise me that the claim was little more than the by-product of a horse(?) More calls were made to sort that out.

    Having dealt with that, delivery was anticipated some time after the approval of the pharmacy was obtained. Except. Except that I had been required to read out my entire list of medications to them for their perusal and scrutiny. Ooops. A different CVS pharmacist noted that there was a drug interaction precaution with the Posaconazole which I take as part of my "immune system in a box." The pharmacist apparently failed to note the fact that SCCA had already reduced the dosing by half, in anticipation of a potential interaction. So, someone somewhere called my wife who in turn called me. I endured the phone tree once again and called the other CVS pharmacist.

    The pharmacist advised me of the difficulty and wanted to discuss it with my hematologist or physician's assistant. Being newly appointed to the position of switchboard operator, I made the call to my PA and left a message. She then called the pharmacy and straightened things out, reminding them that the Fred Hutchinson Cancer Research Center actually knew what they were doing and had adjusted the dose from the start.

    It was now two months since ECP was discontinued, and two weeks since being prescribed the new drug as well as having discontinued the clinical trial. Therefore, I had discontinued two of the three methods of controlling the cGvHD. I had noted a sharp uptick in pruritis, but this seemed to bother exactly no one but me while the gigantic gears of medical progress slowly rotated.

    Wonder of wonders - and not requiring an act of congress (a good thing since elections were in progress), yesterday I was finally promised delivery. After yet another conversation with the CVS pharmacy, I was advised that the long anticipated medication would be sent via overnight delivery. The box arrived today marked "UPS Critical."

    My immediate thought was, if it was so danged "critical", how come it took two weeks (and more phone calls than the first moon landing) to procure the drug?

    Ah, the vagaries of life.

  6. #786
    Super Moderator Top User Baz10's Avatar
    Join Date
    May 2011
    Posts
    5,243
    Jeepers creepers mate and you once said of me that the NHS regarded me as potentially difficult in that I shook the tree.
    Seems to me that our NHS so called antiquated prescription service is a breeze compared to what you have been put through.

    I swear that some jobsworthies try and elevate their stature by throwing spanner’s in the wheels of progress just for the sheer hell of it.
    Diagnosed stage 3 March 011
    Radical resection April 011
    Restaged 2b April 011.
    12/09 Colonoscopy clear but picked up hospital infection.
    Aorta & femoral arteries occluded.
    Clot buster drugs put me in ICU with internal bleeding. 9 blood units later they got it under control.
    Aortobifemoral surgery 5th May. yughh.
    PET scan indicates clear
    DEXA bone scan clear
    13/5 CT showed "unknown" but no concern from docs.
    Inguinal lymph nodes and severe groin pain.
    Ultrasound and MRI show no nasties. Pheww
    Groin pain and enlarged lymph nodes still there.
    October -still the same pains but under semi control.
    Additional chest CT scan ordered for 11th November prior to surgery.
    Sinus surgery done and dusted.
    July 2014 PSA at 5.10. 2months of antibiotics in case of UTI, jan 2015 PSA at 7.20, 23/08 now 8.2, current 8.1
    Prostate Cancer confirmed Gleason 3+Marginal 4.
    Active surveillance continues.
    PET CT Aug 2017 indicated lung nodule changes
    CT Guided biopsy 7/09
    November 1 Vats Wedge section pathology Glomulated previous infection
    no Cancer.

    Not all's rosy in the garden, but see following.
    Stop grumbling Baz, your still alive and kicking so far.
    Age and illness doesn't define who we are, but more what we are able to do.
    Motto
    Do what I love doing, when I can until I can't.
    and dodging bullets in the meanwhile, too many bullets at moment.

  7. #787
    Super Moderator Top User po18guy's Avatar
    Join Date
    Feb 2012
    Posts
    9,751
    Quote Originally Posted by Baz10 View Post
    I swear that some jobsworthies try and elevate their stature by throwing spanner’s in the wheels of progress just for the sheer hell of it.
    And, the bloody mess comes in a bag which states "Chemotherapy Drug!" Apparently, urgency is in the eye of the beholder.

    Once again, thanks, mate! We are on parallel journeys - unfortunately, in a parallel universe.

    One can also see why the term "progress" applies generally to the disease rather than the battle against it.

    As cartoonist Walt Kelly famously penned in his comic strip "Pogo",

    "We have met the enemy and he is us."
    Last edited by po18guy; 11-11-2018 at 03:21 AM.

  8. #788
    Super Moderator Top User Baz10's Avatar
    Join Date
    May 2011
    Posts
    5,243
    Not a foggiest about Pogo
    and I don’t often look in the mirror as whoever is there I hesitate to recognise as myself or a enemy.
    Baz��
    Diagnosed stage 3 March 011
    Radical resection April 011
    Restaged 2b April 011.
    12/09 Colonoscopy clear but picked up hospital infection.
    Aorta & femoral arteries occluded.
    Clot buster drugs put me in ICU with internal bleeding. 9 blood units later they got it under control.
    Aortobifemoral surgery 5th May. yughh.
    PET scan indicates clear
    DEXA bone scan clear
    13/5 CT showed "unknown" but no concern from docs.
    Inguinal lymph nodes and severe groin pain.
    Ultrasound and MRI show no nasties. Pheww
    Groin pain and enlarged lymph nodes still there.
    October -still the same pains but under semi control.
    Additional chest CT scan ordered for 11th November prior to surgery.
    Sinus surgery done and dusted.
    July 2014 PSA at 5.10. 2months of antibiotics in case of UTI, jan 2015 PSA at 7.20, 23/08 now 8.2, current 8.1
    Prostate Cancer confirmed Gleason 3+Marginal 4.
    Active surveillance continues.
    PET CT Aug 2017 indicated lung nodule changes
    CT Guided biopsy 7/09
    November 1 Vats Wedge section pathology Glomulated previous infection
    no Cancer.

    Not all's rosy in the garden, but see following.
    Stop grumbling Baz, your still alive and kicking so far.
    Age and illness doesn't define who we are, but more what we are able to do.
    Motto
    Do what I love doing, when I can until I can't.
    and dodging bullets in the meanwhile, too many bullets at moment.

  9. #789
    Senior User
    Join Date
    Oct 2013
    Posts
    203
    Wow, I am not surprised. I moved away from CVS and have the fear of ever going back to them. They will scrutinize everything. At one time they threaten to stop all medications to husband if I filled a hydro. They said his chemo meds would interact!!!! My head exploded. I left and got another pharmacy right away. I am happy you have the your meds and hopefully your blood pressure did not spike through it all.
    Zorro
    Age 61
    diagnosed March 20 2013
    High Grade Non-Hodgkin Diffuse B-Cell Lymphoma w/some Burkitt like cells involved
    PET showed spots on liver and enlarged spleen w/hot spots all over Lymp areas
    Treatment started Martch 29 2013 R-ECHOP 6 rounds (1 week on 2 wks home)
    Spinal tap w/chemo for insuarnce (clean spinal fluid)
    neulasta shot after R-ECHop treatment
    June 29 PET clean
    Sepr 12 PET clean
    Nov 11 2013 melanoma removed from back all clear margins 7 inch cut
    Nov 25 confirmed MRSA infection and cleared up with bactrim
    Dec 16 still waiting for wound to close and heal (on his lat and he works out)
    wound from melanoma healed and infection gone, great war scar now
    Cat Scan Dec19th scan was clean
    Feb 20th Ct came back NED "NO ENEMY DETECTED" WHEW!!!
    May 20th 2014 NO ENEMY DETECTED!!!!!!!!! CT clean
    Aug 12 Bloodwork came back as doing what it should be doing. Cat scan in Nov.
    Oct 08 2014 tested positive for hyperthyroid. testing this week to find out more.

  10. #790
    Administrator Top User Kermica's Avatar
    Join Date
    Jul 2009
    Posts
    6,458
    Just so amazing what this "system" forces people to endure in order to get what they need (when they do). Of course your rational approach to solving the issue doesn't surprise me one bit. Now that you have fought this fight, it is done, correct? Please don't tell me that next month's delivery needs any special handling.

    Good health,

    kermica

 

Similar Threads

  1. What symptoms did you or your loved-one experience?
    By EchoOfTheShell in forum Pancreatic Cancer Forum
    Replies: 9
    Last Post: 08-03-2012, 05:53 PM
  2. Any experience or advice about liver transplant?
    By Chit85 in forum Liver Cancer Forum
    Replies: 6
    Last Post: 01-11-2012, 03:40 PM
  3. Replies: 5
    Last Post: 07-10-2011, 02:24 PM
  4. One year and one month ago I found out I have colon cancer
    By topazil in forum Colon Cancer and Rectal Cancer Forum
    Replies: 12
    Last Post: 09-03-2009, 03:06 AM

Tags for this Thread

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
  •