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Thread: Follicular Lymphoma for a while now

  1. #2371
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    I am sure you have voiced your apprehensions, and that your medical team have objective reasons to believe that you can withstand this final challenge. Trust in their judgment and be confident that you will walk out the other end of this curative tunnel, free from the constant nagging of the disease you have grown so accustomed to living under. In the end, it is not as if you really had a choice, as you have been clearly told last week… There would be a lot to say about the cruelty of the game which consists in giving the patient an illusory power of decision - but now is not the time, and there probably is not any better way to proceed in the circumstances where your life hangs in the balance, so all that remains is to put yourself in the most capable hands, trust in them and keep your eyes on the prize.

    Wishing you great courage, and the best possible outcome,

    PBL

  2. #2372
    Administrator Top User Kermica's Avatar
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    so all that remains is to put yourself in the most capable hands, trust in them and keep your eyes on the prize.
    You are right about that, PBL and thanks for your post. Whatever is going to happen is out of my hands at this point, as it always has been, actually.

    Preparation continues for the transplant. Monday I will get one more round of R-CHOP, followed by Neulasta on Tuesday. We are trying to keep the beast as far down as possible going into this. The nuclear stress date had to be moved to Monday as I took my beta blocker and it was on the banned list. I don't remember getting that input prior but either way we have a new date. Told to plan 3-4 hours for the test...more joy.

    Then Tuesday the following week is dental work. The dental review team at Dana Farber wants six extractions but my doctor there told me the choice is mine and he well deal with any infection that might arise. I will find out the facts and make a decision after I speak with the dentist early next week.

    The schedule has been fixed and we have a place in Boston a mile away from DF starting in early April. Granix will be administered here locally for the three days before we move over to Boston. I booked the hotel for five weeks and hopefully can get this done in that time frame. If not, we will figure it out. Also hiring a cleaning company to come in while we are gone, supervision to be provided by a friend.The house is pretty clean but the guidance is pretty clear on what the best practice for the situation consists of. I just printed all of the dietary and shopping guidelines for safe food handling and consumption. It is all quite the learning curve but mostly requires a disciplined approach to things I expect. So, trying to learn the rules now to make things easier later.

    Good health,

    kermica

  3. #2373
    Administrator Top User lisa1962's Avatar
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    Keeping you always K in my thoughts and prayers as you move forward with the transplant.

    If your family needs anything, don't hesitate to ask
    We know a lot of people in your area and can always call on them should something need tending to with your home, repairs, yard maintenance, etc.

    Lisa

  4. #2374
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    Wow! You certainly got a lot of work done in a very short time! And still no time to sit back going into this…
    What's the deal with the dental extractions? Do they need every tooth that ever had a cavity to come out? It is reassuring to know that your doctor is giving you a choice on that…
    Wishing you the best,
    PBL

  5. #2375
    Administrator Top User Kermica's Avatar
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    Thanks, Lisa, I appreciate that offer very much! i think we have things covered but will keep it in mind.

    PBL, I had perio surery when I was younger and so still have root pockets which can be bacteria hotspots. In order to minimize that possibility, I met with my surgeon for a clinical plan and then it was reviewed by Dana Farber. The extractions are their recommendation to minimize the risk presented by those pockets.

    Good health,

    kermica

  6. #2376
    Administrator Top User Kermica's Avatar
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    Well, I think we are pretty much good to go for Boston now I had a precautionary R-CHOP last Monday, Nuclear stress test on Thursday, labs tomorrow just to ensure that counts are good for the dental work and then the work itself on Tuesday.

    Then, off to Boston on the 7th and, hopefully, a return home in mid May...may it be so!

    Good health,

    kermica

  7. #2377
    Super Moderator Top User Baz10's Avatar
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    K my dear friend,
    Thinking of you and wishing you the very best outcome.
    Me and the better half
    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.

  8. #2378
    Moderator Top User
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    hope this coming week goes to plan and the 7th will be here before you know, when you get beam have they mentioned if they will give you ice chips or popsicles (ice lollies) to suck on whilst having the melphalan, if not do ask as it helps reduce mouth sores and calphosol is good for mucosis/mucositis and like many side effects, worth preventing, rather than having to treat and play catch up.

    John
    NHL DLBC aggressive stage 4B advanced
    diagnosed april 09
    after 8 rchop and a couple of delays, in remission
    some long term side effects to manage post treatment
    some blips and investigations on the journey but now
    22nd oct 2014 discharged no more hospital visits


    we are all on a roller coaster ride, riding blind never knowing where the highs and lows are.

  9. #2379
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    Thinking of you (and your family) K as you begin this journey. May it be so indeed!

  10. #2380
    Super Moderator Top User po18guy's Avatar
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    It is indeed a rush, with many procedures and tests crammed in. The upshot is that the actual transplant is about as anticlimactic as you can imagine. Nothing more than a transfusion of pale, lymphocyte-rich blood and you go home.

    I was able to secure housing about 5 blocks from SCCA, so that walk was fairly easy even on so-so days. A mile? Well, as you engraft and your marrow produces cells, that will also become do-able.

 

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