I can't think of a specific question and I'm getting anxiety just reaching out bc my dad is holding on to life so hard and his smile ha been gone . Last I wrote they believed my dad became bedridden bc of severe arthritis in l4l5 s1. He underwent a series of two facet joint injections as well as two blood transfusions and iron infusions daily he went down so quickly when his Dr stopped the iron . In the meantime he's been hospitalized three weeks one week to stabilize and two weeks at a rehab where he pushed through ,but the dad I knew ,that beautiful smile he's still with us but due to severe anemia exhaustion and pain,I can't feel him there . He won't take supplements and his Dr is truly a jerk but he insists on using him bc the guy has made him so afraid to lose him . He has secondary chronic lymphocytic leukemia stage 0 as of last year . I'm frustrated bc I can't get him a blood transfusion he needs bc his Dr won't do it unless he's signed up for lu177 which he is but idk when bc my mind is spinning. It's not soon and health care is so crooked and he can't think straight ,and had he signed on with his own hematologist he'd be suffering less bc that was his goal . But the PCA Dr is an egomaniac who threatened to drop him and got angry a year ago that someone else figured out why he could not breathe I had his hematologist on board for quality of life of which he has none . My dad agreed then turned back to this jerk Dr but I have to respect his choices . I go lay next to him and hold his hand but nothing changes the fact that his hand is slipping away . He's my life and I just don't know how to cope . I'm at the point where I don't want to be awake most of the time and I'm waiting for my therapy appointment. I need hope strength experience. Any support groups Northern NJ or on line . I don't even know how or why to fight for my own health wo him bc he's been my rock my whole life .
Petrified ,
Erica
Written by
Daddyishealing
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I'm so sad and sorry for what you're going through. You're Dad is so blessed to have your Love pouring into him. Don't think that isn't helping him. I'm sure that people on this forum much more knowledgeable than I will chime in shortly with some encouraging words of hope and direction.... Know that I am praying for you and your Dad, for whatever that might be worth to you....
May blessings rain down on you both...please maintain Hope....
My friend every prayer and thought is appreciated. If you just could think of us and picture both surrounded by white light for protection I'm so sure that the energy of many does make a difference as did your gentle and kind words . You are appreciated
Daddyishealing - As a CLL+PCa (mHSPCa) two-time winner of the cancer lottery, I suggest you seek some advice from the expert patient/Admin community at HU's CLLSupport. There is also and free consult with a CLL expert that is available upon request at the excellent CLLSociety patient support site. That site also has a very useful "questions answered" page that may help you understand issues related to the CLL. I've included links below:
Sometimes one needs a reliable answer to a simple question. CLL Society offers you access to an expert physician, pharmacist, lab scientist, nurse, and hospice doctor to answer your questions.
Off the top, I suggest that your dad definitely needs input from a "qualified" hematology oncologist (@ Center of Excellence) for any hope of getting him strong enough for the LU177. Normal blood issues with CLL are low platelets and high white count/ALC. Anemia can also be an issue as the blood manufacturing in the bone marrow is often degraded over time. For example, my hemoglobin was at/slightly below low-normal five or so years ago and a min RDA supplementation of iron 2-3 x per week got me back well into the normal range and has kept me there since. Before any patient with CLL would likely be cleared for LU177, they would surely need a bone marrow biopsy to access the ability of the marrow to take the hit it will get from LU177.
I hope this helps you calm the situation so that you and you dad can make informed decisions about what should be done next. Stay as positive as possible and try to sort out current issues and future directions. Best to you and yours as you deal with these critical care issues. Specific questions of this patient community are welcomed.
Ahh all I wrote erased so for now ty so so very much and I'll try to write again tomorrow bc my pain is stopping me. I don't want to be a pain in the butt but I have some questions if you don't mind the correspondence. If it's easiest for you I could also give you my number bc writing is difficult for me . However ,I always hope somehow the info exchanged helps others now or in the future .Ty for automatically placing things in a lighter arena my second favorite two time lottery winner 🏆 lol ❣️❣️❣️❣️healing and love to all, Erica .
DIH - Sorry for the tardy reply, as I just now saw your 2nd reply. HU messaging utilities are crude, to say the least. Long-term users have lost many messages and find first typing long ones in a simple text editor (like Windows Note) or a word processor (like Windows Word) - and then copying the text into HU is a more reliable technique and much less likely to cause lost typing efforts.
As for any questions, feel free to type them here or PM them to me using the HU chat function. I am unable to initiate a chat connection from my end, (don't ask why - as it a long story), so you will have to do that to chat privately with me.
Hoping your dad's situation has improved and your "what-to-do-next" plans have been helped by the suggestions here at FPC. We are not doctors (well, a few members here are), but are more than willing to share any experiences we have that will help you navigate your current trouble waters. As I often like to remind patients and their caregivers, "The only stupid questions are the ones that never get asked". So keep asking.
Remember to keep your emotional glass at least half-full (minimum) and take very good care of yourself as you do the same for your dad.
I know it's almost impossible to get "Daddyislistening". Most men do NOT know how to interact with people in the medical field. Since you're in northern N.J. I would recommend he change his M.O. to a doctor located at Memorial Sloan Kettering Hospital in Manhattan NYC (68 street and 1st avenue (or York avenue)). They have Parking garages with reduced fees and buses to the main building. Get him away from his A-hole current doctor. Tell if he doesn't want to change I'll visit him up in NJ and kick his ass. You are a wonderful daughter who is taking on all of the responsibility and aid in helping your dear one. God will Bless you...
Cujoe and j-o-h-n have given you some good advice. Take Daddy to MSK for a second opinion and see what they advise. At this point, his team seems to have no "good" answers and MSK is a Center of Excellence... clinical trials available... it never hurts to try.... otherwise, you are stuck with the status quo...
Cujoe's title is "K9 Enemy of the State" and he refers to me as "Dangerous Dave"... he stated that my forum content was "too dangerous" for consumption in some places... At some point, I will put out my post, " About Four Years Ago, Two Dudes Arrived at FPC".. It is our tale... we tell it with pride... and soon...
We do appreciate prayers...Hope you get some help for Dad.... MSK is top notch... we will keep Dad in prayer... hang tough... he has a great advocate in you...
I am aware of the expansion into NJ, but I would go to the Sidney Kimmel Center which has a larger selection of MD's and ongoing clinical trials, however, I realize that traveling with your Dad may be a big part of the issue..... Do you live near Bergen??
I found this MD at Bergen--he is involved in GU cancers like my MO, but does prostate cancer and his ratings were excellent. Comments on reviews outstanding. Someone to consider...
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