Topic: Update on my brother

It's been quite a long time since I've been on this site and thought I'd give an update on my brother, who was diagnosed with with Stage IV CC last June. First of all, I want to thank Helen and Gavin again for providing my brother with contact info for a doctor who was willing to step in and help out if he had a problem during his trip to the UK. He was able to make contact and felt so much better knowing that he had a "Plan B" in place. Fortunately, he didn't need to use it!

In January, he began a 30 session radiation treatment. He debated whether to do it as the doctors at Mayo had said he wasn't a candidate, but after chemo, his doctors here felt that the tumors had shrunk and that it might be effective. It really took a toll on him, though. It was much tougher than the chemo was and he really hasn't felt good ever since he started the radiation treatments.  He finished up his radiation treatment at the end of February. He took a brief break from the medical community, but then in March/April  he came down with pneumonia, and a CT scan showed a metastasis to his spine, which needed to be treated with 5 sessions of radiation. He was supposed to get a reprieve from the medical community after that, but he started to suffer from ascites, developed a hernia from all the coughing during the pneumonia, etc. Two weeks ago, they discovered that he was anemic during a routine blood test, and that meant a blood transfusion that took 11 hours. More ascites, another CT scan and a PET scan in which his abdomen "lit up" and the doctor said that he had microscopic cancer cells floating around his abdominal cavity. He planned on taking a trip to Vegas this week with his sons and a group of friends and went to the doctor on Monday to have him check out his persistent cough. His lungs were ok, but blood tests showed that his hemoglobin had dropped to 4 and his platelet count was 2,000! (less than two weeks earlier, it had been around 140,000!!) So, he was taken immediately to the hospital and placed in intensive care. He had a reaction to the transfusions and developed a fever of 104 and couldn't stop shaking. After his platelets came up enough, he had an endoscopy done, which showed esophageal varices and a bleeding ulcer in his stomach. They now think that he has developed an immune thrombocytopenia. Understandably so, he has started to question "quality of life" issues. We are having a family meeting tomorrow with his chemo doctor, and the hospitalist, who is also a hospice doctor.

Lainy, you mentioned earlier that you had a list of what to expect during  the last stages of CC. Could you please send it to me so that we know what to expect. I know that others have asked questions on this site about how you know when you're near the end. I guess that is where we are now. How do we know? What should we expect? etc. Any feedback from those of you who have gone through this journey would be greatly appreciated. Thanks!

Re: Update on my brother

Peggy, I'm so sorry to hear what your brother has gone through, as well as your whole family. This is a horrible disease. I will include you all in my prayers.
Melinda

Re: Update on my brother

Peggy,
I am so sorry that your brother and your family are going through such a difficult, exhausting and heartbreaking time. I wish I had some words of wisdom to help you through. All I can offer is my prayer for strength, comfort for your brother and peace to be able to face all the treatments and decisions. God Bless....Melinda B.

Re: Update on my brother

Dear Peggy,

I'm sorry to hear it has come to this.  Unfortunately too many on here tonight who are in this situation.  I will add you and your brother to the list of those I am thinking of and praying for tonight.

Hugs,
Darla

"One Day At A Time"

All of my comments and suggestions are just my opinions and are not a substitute for professional medical advice.   You should always seek the advice of your physician or other qualified health care providers.

Re: Update on my brother

Prayers for your brother and family tonight.

"Just for today, I can get through anything."  Hey....I'm a cancer survivor, not a doctor.  The opinions I state are my own, based on my personal experiences or knowledge.  As always, talk to your doctor about your concerns and treatment.

Re: Update on my brother

Oh, Peggy, this is so hard to believe, wow, what your poor brother has been through. I am sending you the list now. I went to bed but couldn't sleep so came back on line, glad I did. Hospice is great but make sure they are not stingy with pain meds as comfort is the bottom line. Please feel free to email me at any time and please try to be very strong.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Update on my brother

Thank you all. Lainy, I received the list. Thanks! I'm off to the family meeting with the doctors and my brother's family this morning.

Re: Update on my brother

Peggy, I'm real sorry to hear this latest news about your brother. I so hope that you get some good news at the meeting with everyone today and please be sure to let us know how this goes. We are all here for you and my thoughts are with you right now.

Hugs,

Gavin

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

Re: Update on my brother

Great news! His blood counts have stabilized and so the doctor said that it confirms that the problem with the platelets was caused by an autoimmune response to the platelets (his body is attacking the platelets). But, the good news is that the doctor thinks that they can manage it with steroids. So, he is no longer bleeding, his platelets are up to 19,000 (still low but WAY better than 2,000!) and the doctor discharged him today! He has to return to the hospital for a blood check on Sunday and then he returns to the oncologist on the 16th for another CT scan and blood work. But the director of the hospice program said that my brother isn't ready for hospice yet and that he believes that he has some more "tread left in his tires". As many of you have mentioned before...it's a real roller coaster ride, isn't it? He came so close to not making it this week, and now things are looking good again!

Thanks for all your good wishes and prayers!
Peggy

Re: Update on my brother

Peggy, YIPPEE! Great news and I wish for the great news to continue. Thanks for the update and all the best to your brother and family!

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Update on my brother

Peggy, 

Thanks for the up date.  Glad to hear this.  Keep the good news coming.  smile

Hugs,
Darla

"One Day At A Time"

All of my comments and suggestions are just my opinions and are not a substitute for professional medical advice.   You should always seek the advice of your physician or other qualified health care providers.

Re: Update on my brother

Such good news to hear today.  I've been kind of weepy today....not feeling great myself and then with some of the sad news on the boards the last 24 hours....so this turn around is wonderful news.  More prayers your way.

Julie T
Iowa Girl

"Just for today, I can get through anything."  Hey....I'm a cancer survivor, not a doctor.  The opinions I state are my own, based on my personal experiences or knowledge.  As always, talk to your doctor about your concerns and treatment.

Re: Update on my brother

Oh, Julie, give me a smile. Hope you are feeling OK other than the tears. We should be together today as I don't feel so good, had my Remicade infusion 2 days ago and they increased me from 4 to 7 vials. I always get a reaction in the beginning BUT woke up to clouds today, yea! Something different. Try to have a good 4th, 5th, 6th and onward. Sending you a huge cyber hug. {  }

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Update on my brother

Great news Peggy, thanks for that! My fingers are crossed that this can indeed be managed with steroids and I wish your brother all the best with this and his upcoming CT as well. Please let us know how things go and hoping that this is time for the rollercoaster to start going up again!

Hugs,

Gavin

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

Re: Update on my brother

Peggy,
Great news! So happy to read about the improvements with  your brother.
Lisa

This Information Is Not Intended Nor Implied To Be A Substitute For Professional Medical Advice. You Should Always Seek The Advice Of Your Physician Or Other Qualified Health Care Provider

Re: Update on my brother

OK, we're back on the roller coaster! :-( My brother went back to the hospital today (48 hours after his platelets had gone up to 19,000) and they had dropped back to 9,000. The doctor upped his steroids and he goes back to the hospital tomorrow. If they drop any lower, they will have to give him platelets. His hemoglobin has also dropped a bit, but they aren't too concerned (7.5, down from 8.9) The biggest concern is the platelets as they can cause bleeding, which will in turn lower his hemoglobin.

Re: Update on my brother

Wow, Peggy, you really are on a roller coaster and I hope it comes to a screeching halt and soon!
As always wishing your brother the very best. Thank you for keeping us updated.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Update on my brother

Peggy -
I wish as much as you do that you and your whole family could get off this blasted roller coaster. It is not one bit of fun. And too many of us have been on it.

One thing too look at is all of his medications and make sure that he's not any that might affect platelets and other numbers. When my husband got so bad a few months ago I took a look at everything and limited him to just the essentials. It would certainly be something to look at. Another thing would be to make sure he's on a good multi-vitamin if he's not already. We use PreNatal. It cracks my husband up when I remind him what he is taking but they are one of the best vitamins.

Good luck with everything and keep us posted.

KrisV

And Lainy and Julie - I too have felt a little off the last couple of days. I blame it on the weather (too hot here for me) and then too much thinking about what happened a year ago. I have to stop it.

Any advice given is based on my experiences and should not be substituted for any medical recommendations. Please speak with your provider before making any changes.

Re: Update on my brother

Kris, you know the old saying, yesterday has passed, tomorrow is not here and today is the present, a gift. Don't get ahead of today and let yesterday go so that you can unwrap a great tomorrow! I know, I know, easier said then done!

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Update on my brother

His counts have basically "held" since yesterday (platelets are at 10,000 and hemoglobin are at 7) so they want to give him two units of red cells and 1 of platelets tomorrow. (He's finally getting a PICC line in today...YAY!) Kris, he hasn't been taking any meds, except now he is taking steroids for the immune thrombocytopenia. The oncologist wants to do a bone marrow biopsy later this week to see if they can figure out why he isn't making red cells. It seems odd that this is happening now. He hasn't had chemo since last fall, and finished up his radiation treatments in February. Is it common to have suppression of the bone marrow months after chemo/radiation?