Home         Forums  

Go Back   Marrowforums > Bone Marrow Failure Diseases > Bone Marrow Failure
Register FAQ Search Today's Posts Mark Forums Read

Bone Marrow Failure Causes, treatment approaches, terminology, related diseases

Reply
 
Thread Tools Search this Thread
  #326  
Old Fri Jun 19, 2015, 02:58 AM
Chirley Chirley is offline
Member
 
Join Date: Oct 2007
Location: Logan City Australia
Posts: 1,100
I'm at a loss, don't know what's happening. Still in hospital. Very weak. Hb has dropped from 66 to 56 in four days despite copper treatment. My physician has called the oncologist back in. It's not looking promising. I've been given the "failure of treatment" talk.

Just too tired to care much at this point. Sleeping most of the day and night but feeling more settled than a week ago.....much less pain.
Reply With Quote
  #327  
Old Fri Jun 19, 2015, 04:21 AM
Cheryl C Cheryl C is offline
Member
 
Join Date: Dec 2011
Location: Lake Macquarie, Australia
Posts: 843
Hi Chirley from Mt Hagen in PNG. We're over half way through our volunteer stint. The usual vicissitudes of a third world environment but getting lots of work done. Hard to know how much will be achieved - they are really keen on introducing voc ed to assist kids leaving school to get jobs but there are road-blocks too such as classes of 60-70 kids so their workload is already huge without something new being added. Working with deeply committed great people.

So sorry to hear of your apparent decline at present. Thinking of and praying for you. I hope your onc has a brilliant idea to get you back to independent living again! Enjoy your flights into the world of imagination - those beautiful places you like to visualise as you rest.
__________________
Dx MDS RAEB 10% blasts + hypogammaglobulinemia, Sep 2011. Jan 2012 BMB - blasts down to 2% w/out treatment so BMT cancelled. Re-diagnosis RCMD. Watch and wait from Feb 2012. IVIg 5-weekly. New diagnosis Oct 2019 AML 23% blasts in marrow, 10% blasts in peripheral blood.
Reply With Quote
  #328  
Old Fri Jun 19, 2015, 07:16 AM
SLB SLB is offline
Member
 
Join Date: Mar 2012
Location: Brisbane, Queensland, Australia
Posts: 130
Oh Chirley, I am sadden to read your post! Like Cheryl said, I hope the onc has some new & unusual ideas to help you. I can only imagine how a hb of that low feels like.. Thinking & praying for you too xx
__________________
Sharnie, 37yo, dx Mar 2012 RAEB II 13% blasts. 8 months of Vidaza. Transformed to AML in Nov 2012, induction chemo, no remission. 2nd lot of chemo, remission achieved. SCT with 8/10 match, Mar 2013.
Reply With Quote
  #329  
Old Fri Jun 19, 2015, 10:39 AM
Marlene Marlene is offline
Member
 
Join Date: Oct 2006
Location: Springfield, VA
Posts: 1,406
I'm so sorry to hear the copper is not doing it's job anymore. I too hope the Oncologist can shed some light on things for you.

Thinking of and wishing you only the best.

Marlene
__________________
Marlene, wife to John DX w/SAA April 2002, Stable partial remission; Treated with High Dose Cytoxan, Johns Hopkins, June 2002. Final phlebotomy 11/2016. As of July 2021 HGB 12.0, WBC 4.70/ANC 3.85, Plts 110K.
Reply With Quote
  #330  
Old Wed Jul 15, 2015, 01:03 AM
Chirley Chirley is offline
Member
 
Join Date: Oct 2007
Location: Logan City Australia
Posts: 1,100
Well, I'm back after being given blood transfusions and copper. The news is that it "looks like youre now resistant to copper" to provide the exact quote. So I don't know where I go from here. Watch and wait I suppose. I feel much better after the blood transfusions though.
Reply With Quote
  #331  
Old Wed Jul 15, 2015, 02:42 AM
Cheryl C Cheryl C is offline
Member
 
Join Date: Dec 2011
Location: Lake Macquarie, Australia
Posts: 843
Good to hear something positive from you, Chirley. I hope the transfusions give you some lasting relief. Does "resistant to copper" mean that you went through that process for no benefit?
__________________
Dx MDS RAEB 10% blasts + hypogammaglobulinemia, Sep 2011. Jan 2012 BMB - blasts down to 2% w/out treatment so BMT cancelled. Re-diagnosis RCMD. Watch and wait from Feb 2012. IVIg 5-weekly. New diagnosis Oct 2019 AML 23% blasts in marrow, 10% blasts in peripheral blood.
Reply With Quote
  #332  
Old Wed Jul 15, 2015, 08:26 PM
Chirley Chirley is offline
Member
 
Join Date: Oct 2007
Location: Logan City Australia
Posts: 1,100
Hi Cheryl. I really don't know what it means. I didn't speak to my physician or haematologist. I saw my GP who had spoken with the physician about the results of all the tests I had taken on my last admission amongst other things and that's what my GP told me was the conclusion they had come to. The upshot of it is that I'm not going for regular copper treatments any more but my GP is going to monitor my blood counts and when my Hb falls to 80 he will refer me to the hospital for whatever treatment they deem appropriate. Hb currently 100 after another 3 units.

My neuts are sitting at 1.0 and lymphs at 0.4 so I'm very happy with that. I no longer have a j tube for feeding because the one I had got infected with pseudomonas again....I insisted it was removed! I just had enough of putting up with green offensive pus coming from my abdo every other month. Seeing a surgeon next week about whether a new one (hopefully without the continual infections) is a possibility. I may just have to have a nasal feeding tube. Currently 43kgs.

I'm surprised that I'm feeling better than I have been in quite a long time. I even went out shopping just for fun yesterday, came home very tired but still felt well. Now...to try and grow some hair back would be nice...I'm cold!
Reply With Quote
  #333  
Old Thu Jul 16, 2015, 09:11 PM
Cheryl C Cheryl C is offline
Member
 
Join Date: Dec 2011
Location: Lake Macquarie, Australia
Posts: 843
Oh Chirley - do try and get some nutrition into yourself ASAP! I am small at 51 kg but 43 is something else.

So pleased that your bloods have reached liveable levels. I do hope this continues. Enjoy!
__________________
Dx MDS RAEB 10% blasts + hypogammaglobulinemia, Sep 2011. Jan 2012 BMB - blasts down to 2% w/out treatment so BMT cancelled. Re-diagnosis RCMD. Watch and wait from Feb 2012. IVIg 5-weekly. New diagnosis Oct 2019 AML 23% blasts in marrow, 10% blasts in peripheral blood.
Reply With Quote
  #334  
Old Tue Jul 21, 2015, 05:39 AM
Chirley Chirley is offline
Member
 
Join Date: Oct 2007
Location: Logan City Australia
Posts: 1,100
Hi Cheryl, I went to an upper GI surgeon today to see about having another feeding tube inserted into my abdo wall and came away a bit shell shocked. Despite my medical problems he is adamant that I need a Roux en Y bypass surgery to bypass the part of my stomach that is abnormal, prevent the food regurgitating into my oesophagus (which doesn't function properly) and allow me to eat. Unfortunately I'm not a candidate for keyhole surgery so it's open surgery as well. He wants to admit me to hospital and put a feeding tube down through my nose through my stomach and into my small bowel and feed me hyperalimentation for a week prior to surgery.

I told him I wasn't keen on having any surgery but I promised to go away and think about it.

All up it would be about three weeks in hospital if all goes well. It's normally a shorter stay but my surgery would be open and my nutritional levels not good and I have existing medical problems...that's why the longer hospital stay.

Oh, and just for an added bonus...he charges more than the insurance company covers! So I imagine I will be about $5000 out of pocket as well.

I've given myself a deadline by next Friday to make the decision.
Reply With Quote
  #335  
Old Thu Aug 20, 2015, 07:32 PM
Chirley Chirley is offline
Member
 
Join Date: Oct 2007
Location: Logan City Australia
Posts: 1,100
Thought I'd post an update. I've been re admitted to hospital. I'm in complete isolation due to neutropenia. Never been in this situation before. Everyone is wearing long sleeved gowns, masks, gloves etc.

I have no idea what my count is.

They attempted to insert a feeding tube yesterday but it was unsuccessful. The x Ray tech couldn't push it through my stomach into my small bowel, so I'm having one put into today under sedation in theatre. Surprisingly, the one yesterday without sedation wasn't that unpleasant even though it wasn't successful. I didn't even gag!
Reply With Quote
  #336  
Old Thu Aug 20, 2015, 09:30 PM
Cheryl C Cheryl C is offline
Member
 
Join Date: Dec 2011
Location: Lake Macquarie, Australia
Posts: 843
Thinking of you Chirley. So sorry you have had this setback when things seemed to be looking a bit better. I do hope that the procedure today will be successful and will allow your body to receive the nutrients you so badly need.
__________________
Dx MDS RAEB 10% blasts + hypogammaglobulinemia, Sep 2011. Jan 2012 BMB - blasts down to 2% w/out treatment so BMT cancelled. Re-diagnosis RCMD. Watch and wait from Feb 2012. IVIg 5-weekly. New diagnosis Oct 2019 AML 23% blasts in marrow, 10% blasts in peripheral blood.
Reply With Quote
  #337  
Old Fri Aug 21, 2015, 10:32 PM
Chirley Chirley is offline
Member
 
Join Date: Oct 2007
Location: Logan City Australia
Posts: 1,100
Thanks Cheryl....feeding tube in.

I'm having my second transfusion this week. That's not great. Neuts still low enough to be in isolation but no matter how many times I ask they just won't give me a number. I guess that if its low enough for isolation then that's all I need to know.

I'm still on the potassium drip too. The good thing is that I'm feeling so much better than I was on Monday.
Reply With Quote
  #338  
Old Fri Aug 21, 2015, 10:49 PM
cathybee1 cathybee1 is offline
Member
 
Join Date: Aug 2010
Location: Fort Jones, California
Posts: 399
Praying for you, Chirley, and glad you're feeling better. Catherine.
__________________
Catherine, wife of Bruce age 75; diagnosed 6/10/11 with macrocytic anemia, neutropenia and mild thrombocytopenia; BMB suggesting emerging MDS. Copper deficient. Currently receiving procrit and neuopogen injections weekly, B12 dermal cream and injections, Transfusions ~ 5 weeks.
Reply With Quote
  #339  
Old Sat Aug 22, 2015, 08:49 PM
Chirley Chirley is offline
Member
 
Join Date: Oct 2007
Location: Logan City Australia
Posts: 1,100
Thanks Catherine, really glad to hear that you and Bruce are soldiering on. I'm sometimes truly amazed how much our bodies can take.

Good news for me.....neuts have risen all by themselves....finally got a number out of them. They have come up to .6 again so I'm in the safe range and no more isolation.

My BP has climbed to the high 80s/? so IV fluids have been reduced and because my body is responding nicely to being fed again I don't need the potassium any more. I was even told ? home Monday. Another bump in the road it seems.

Still alive.
Reply With Quote
  #340  
Old Sat Aug 22, 2015, 11:20 PM
Cheryl C Cheryl C is offline
Member
 
Join Date: Dec 2011
Location: Lake Macquarie, Australia
Posts: 843
Great that you're posting Chirley. I've been wondering how you're going. That's hopeful news. 0.6 neuts is OK - mine sit around there a lot, but of course I don't have the other issues you have to contend with. Will be wonderful if you can get back to your cats on Monday!
__________________
Dx MDS RAEB 10% blasts + hypogammaglobulinemia, Sep 2011. Jan 2012 BMB - blasts down to 2% w/out treatment so BMT cancelled. Re-diagnosis RCMD. Watch and wait from Feb 2012. IVIg 5-weekly. New diagnosis Oct 2019 AML 23% blasts in marrow, 10% blasts in peripheral blood.
Reply With Quote
  #341  
Old Sun Aug 23, 2015, 01:23 AM
cathybee1 cathybee1 is offline
Member
 
Join Date: Aug 2010
Location: Fort Jones, California
Posts: 399
That's wonderful news, Chirley. Going home is awesome.
__________________
Catherine, wife of Bruce age 75; diagnosed 6/10/11 with macrocytic anemia, neutropenia and mild thrombocytopenia; BMB suggesting emerging MDS. Copper deficient. Currently receiving procrit and neuopogen injections weekly, B12 dermal cream and injections, Transfusions ~ 5 weeks.
Reply With Quote
  #342  
Old Fri Aug 28, 2015, 08:23 PM
Chirley Chirley is offline
Member
 
Join Date: Oct 2007
Location: Logan City Australia
Posts: 1,100
Got a throat infection from the feeding tube and it's been taken out. I'm back in hospital, in isolation, due to low neuts. Interestingly, I never got a fever. (well, only mildly).....I suppose I didn't have the capacity to develop a fever. However, direct examination of the throat showed the infection with swelling and some redness. I know it was very painful but it's a lot better now.

They (surgical docs) want to give me Neupogen but I'm a bit wary as I've had excess blasts before and the haem wouldn't give me Neupogen then. I've asked the surgical docs to check with the haem docs first but that hasn't happened.
Reply With Quote
  #343  
Old Sat Aug 29, 2015, 01:52 AM
Chirley Chirley is offline
Member
 
Join Date: Oct 2007
Location: Logan City Australia
Posts: 1,100
Haem docs said to give GCSF so I've just had my first dose ever.
Reply With Quote
  #344  
Old Sat Aug 29, 2015, 01:35 PM
HopeW HopeW is offline
Member
 
Join Date: Aug 2015
Location: florence,sc
Posts: 27
Has been praying for you. Your story are so inspiring. So glad you are getting better.
__________________
41yo Female, AA with digestive problem in May 2005, hATG+Cyclosporine no response, 11/2005 SLE diagnosed, Cellcept+pred, digest resolved, but still tx, 5/2008,shingles and IV pred, stop cellcept, tx free until 5/2015, MDS EB1, Marrow blast 9%, Monosomy 7
Reply With Quote
  #345  
Old Sat Aug 29, 2015, 02:07 PM
cathybee1 cathybee1 is offline
Member
 
Join Date: Aug 2010
Location: Fort Jones, California
Posts: 399
Hope you have a good response to them. They do make Bruce very achy, but they have pulled him through some very bad infections.
__________________
Catherine, wife of Bruce age 75; diagnosed 6/10/11 with macrocytic anemia, neutropenia and mild thrombocytopenia; BMB suggesting emerging MDS. Copper deficient. Currently receiving procrit and neuopogen injections weekly, B12 dermal cream and injections, Transfusions ~ 5 weeks.
Reply With Quote
Reply


Thread Tools Search this Thread
Search this Thread:

Advanced Search

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

vB code is On
Smilies are On
[IMG] code is On
HTML code is Off
Forum Jump

Similar Threads
Thread Thread Starter Forum Replies Last Post
Copper defiency Birgitta-A Bone Marrow Failure 3 Mon May 13, 2013 07:46 AM
Copper deficiency induced bone marrow failure Chirley Bone Marrow Failure 140 Sun Dec 16, 2012 07:26 PM
Guide to the Treatment Center Map Marrowforums Site Announcements 0 Tue Jan 1, 2008 11:22 PM
Interactive Treatment Center Map Marrowforums Site Announcements 0 Tue Jan 1, 2008 11:22 PM


All times are GMT -4. The time now is 05:51 PM.


Powered by vBulletin® Version 3.6.7
Copyright ©2000 - 2024, Jelsoft Enterprises Ltd.
Forum sites may contain non-authoritative and unverified information.
Medical decisions should be made in consultation with qualified medical professionals.
Site contents exclusive of member posts Copyright © 2006-2020 Marrowforums.org