Update on Joy and question

07-12-2009, 06:31 AM

Good morning, Joy is still in the hospital having a very rough time. She has internal bleeding in her intestine, that is why even after 6 units of blood her counts keep dropping. So she is having and colonoscopy and endoscopy this morning (Sunday). She asked me to ask if anyone has had experience with internal bleeding from chemo? We are just grasping for answers and a game plan. Her onc is out of town again and feel very much on our own in all this. She's so weak and tired, I don't know how much more she can take.

Marie thank you very much for your comments on my other post. Your positive energy is a constant source of inspiration. And thank you to everyone for keeping my sister in your thoughts and prayers. Jennifer

sassy · 07-12-2009, 07:57 AM

Jennifer,

I'm sorry I can't offer any info on intestinal bleeding from chemo, but I do want to let you know that I am keeping Joy and you in my thoughts and prayers.

'lizbeth · 07-12-2009, 08:40 AM

Jennifer,

I had a very minor case of bleeding during chemotherapy. My sister-in-law went into the hospital for a heart attack and they discovered that she had ulcers. I hope that they find something fixable soon and Joy will be able to start on her journey back to recovery.

(cyber hug)

'lizbeth

Mary Anne in TX · 07-12-2009, 08:43 AM

Hi Jennifer! Thank you for the update. Wish it was better news about Joy. I don't have any answers, but want to send love and hugs to you both. ma

Yorkiegirl · 07-12-2009, 09:27 AM

Jennifer I am so sorry that Joy is having this problem. I don't have any answers for this problem.

I am praying real hard for Joy.

WomanofSteel · 07-12-2009, 10:02 AM

I am sorry to hear that Joy is having such a bad time of it. I hope once they find the source of the bleeding things resolve for her. I will keep you both in my prayers.

Believe51 · 07-12-2009, 10:43 AM

Hey Jennifer!! Sometimes low platelet counts can cause internal bleeding and this is one of the more severe side effects of chemotherapy. One of the areas for bleeding is the intestinal tract. I know they are doing blood transfusions but are they giving Joy any platelets???? I would ask what the platelet count is.....if it is below 20,000-30,000 she may be in need of a transfusion of platelets. Internal bleeding can and mostly often will occur, even without injury. Ask ASAP what her count is and demand to see the blood results. Does she have any tiny red dots on her body, especially her lower legs?? This would represent platelets too.

Jennifer, Ed and I are at this point.....no more Ixempra. I do not say to do the same for Joy or to influence you. I need to say this because I would not be a good friend to Joy or you if I did not. There will be no more of this drug for him, he is too frail and cannot bounce back from it. He has passed out too as you know, taste buds finally coming back, his strength is weak but slowly returning and he fatigue is awful. Ed has severe neuropathy in his hands and feet and has to gag down food but getting a bit better.

Please note to all Her2family: This is a tough drug and so are many others. If your oncologist suggests this, please do not be afraid and keep your options open. Remember how frail Joy and Ed are. Unfortunately, this drug is being given to patients whose previous chemos failed or stopped working and the patients are a little more 'journeyed' than others. I beg you all not to be no more afraid of this drug any than any other chemo drug, it has had great results for many. In the future the Ixempra will be given to others who are in better physical health than these two Angels. I am not here to scare anyone but you all have followed Joy and Ed, this medicine is too tough on them.

TO JOY: I know you are tired Sweetheart but you are going to have a period of getting strong before moving forward. I want you to keep fighting and try to keep yourself hydrated and well rested. Ed is recovering well and I have faith you will too. Right now you need to stay strong and determined and soon you will be on that same road. Without your treatment this week you will be able to grab back the Joy that you know and love. Hang tough Lovey, I know you can conquer this, you just have to heal more important things right now.

I am sending love and prayers for both of you fine ladies today. I toast this Latte to you Joy. The word is out about us and everyone knows I am highly addicted to these babies!! (smiling hard)......SALUTE!!>>Believe51

CLTann · 07-12-2009, 10:56 AM

In this day and age, out of town doesn't mean out of touch. Try to get her onc to do something that will stop gap the immediate problem of bleeding. Try all means to lift the curtain of darkness, let sunshine come in again. We are all suffering from the bad news. Have courage and spirit to fight, fight and fight. Ann

07-12-2009, 11:11 AM

I'm here at the hospital waiting for her to come back. The Doctor said she had about three ulcers in her intestine, which he said is the best case scenario. So they will start her on IV Nexium, get her stabilized and maybe someday she can get out of here. But she is doing well after the procedure, they had to use general anaesthesia.

Marie, thanks again for you input. Ixempra has got to be the toughest drug she has ever been on. She has been fighting this for 8 years and this is the worst it has ever been and she did 18 months on Taxotere-Xeloda! I have never seen a drug beat someone up so quickly. I really don't want her to have anymore, but her onc hasn't offered up any alternatives either. So I am of course worried and onto more research. As always any suggestions are more than welcome! Thanks for listening! Jennifer

'lizbeth · 07-12-2009, 01:34 PM

Jennifer,

That sounds like good news discovering ulcers. I'm so glad the doctors have discovered them and are treating them.

'lizbeth

MJo · 07-12-2009, 01:36 PM

Since we live on Planet Cancer, nobody here will find it strange when I say I am so glad it's ulcers. I hope those ulcers will heal and Joy will get her appetite back. Plump up, Joy!!

lexigirl · 07-12-2009, 02:16 PM

Oh I hope that Joy begins to feel better now that they have found these ulcers. I do hope she gets her strength back very soon.

Sending hugs to Joy and her girls.

Lexi

Chelee · 07-12-2009, 03:16 PM

I am glad they found the cause of the bleeding and I hope and pray Joy gets to feeling better real soon. I can't offer much but I will keep you both in my thoughts and prayers. Thanks SO MUCH for keeping us update on Joy. Please tell Joy how much we are all pulling for her. Sending warm healing thoughts her way!

Chelee

jones7676 · 07-12-2009, 05:04 PM

I am having trouble on Ixempra similar -in fact I am from a sending this message from the hospital and being treated for gastrointestinal as well. I don't have options that I'm aware of either and I'm very scared. Hopefully I will be well enough now to keep up with the site and how this is going for others that I care about.

Believe51 · 07-12-2009, 05:34 PM

Hey Jennifer and Barb!! I'll try to help you both with anything you may need, just ask. In the meantime your responsiblity is for these three to heal, Joy, Barb and Mighty Oak. He told me before that he would rather 'drink' Adriamycin right from the bottle!! I laugh at this and again this is something only we in cancerland would understand and laugh at!

Personally, maybe the recommended dosage of this drug should be examined again, rethought and possibly readjusted (not our oncologists' faults). I am going to contact the drug company and ask some questions I have.

I am happy they found the ulcers and helping Joy to recover some more. Ed wanted me to mention that he initially thought this was the cancer kicking his butt, now he knows it was the drug. He wants you both to hang in there and fight! Usually he does not voice his feelings or opinions for others journeys like I do, he now speaks. He said that it will be about another week before he is back together a bit more. Looks like it will be Temodar and something else for his mix after all.

Drats, I thought this would be our magic potion. To the drawing board again, for our potion does exist. Look for synergy and keep the options open. Maybe all of us will need to do a previously tried chemo med with something that will provide that synergy. This disease is really p***ing me off now. Do not lose faith ladies.

I wonder how our Kavy has been feeling? She seems to be doing alot better than you three. I wonder if she knows what her dosage is. Do we know what our dosage is? Just thinking outloud. Off to fight for our three musketeers!!>>Believe51

suzan w · 07-12-2009, 05:41 PM

I agree, only here do we breathe a sigh of relief if it is ulcers. And I can only imagine drinking adriamycin right from the bottle, as it is sheer HELL in an infusion. Prayers to all of you and thanks for somehow maintaining our sense of humor through all this
*%&# XOX Suzan

juanita · 07-13-2009, 04:36 PM

glad to hear that it's only ulcers. sending love and prayers for a speedy recovery now that you know what the problem is.