Topic: Mets to lymph and/or bone marrow?

Husband had  resection in April 2007  and been in hosp or back to drs for pain, fever, etc about every month since surgery.  Recently his platelets dropped to 78 and lymphocytes to 400.  We had appt with new Oncologist this week but since new Dr. needs records we wont see him again till the 19th.  Meanwhile husband is getting more sick.  He slept all day today and is back on strong pain  and naseau meds.  The Dr. may do a bone marrow biopsy but wanted to see all the records first.  It just takes toooo long!!  Drs just dont tell you anything unless you know what to ask.  Its so frustrating!  Anyway, thanks for being there to listen. I just needed to vent!!  Gerrys wife, Cathy.,

2 (edited by JeffG Sun, 11 Nov 2007 16:30:51)

Re: Mets to lymph and/or bone marrow?

Hi Cathy, sorry to hear about your husbands condition.  I think I'm begining to experience the same and have a nuclear bone scan set up for Thursday.  I had one last year that was negative but new pain in shoulder joints and arms.  I did find a site about Bone Mets that may be helpful.  http://www.novartisoncology.com/page/bo … e&nova  I hope this link works?
God Bless Jeff G.  P.S.  Not working as I bookmarked but If you click on this link then under patients inform click on Bone matatases.

Take it to the Limit,One More Time! (Eagles)

Re: Mets to lymph and/or bone marrow?

Thanks for the info Jeff.  It is helpful and less frightening to be more informed and know that others are facing the same storm.  We look at each new problem as a storm and not a disaster.  Gerry is some better today.  I'm trying to keep him a bit ahead of the pain/naseau and it seems to help.  It's so hard for a man who has been so active and self reliant to rely on drugs to keep him going from hour to hour.  You remind me, from what youve written in the past, alot of Gerry.  I think the two of you could really relate with one another.  He's just not up to sitting at the computer right now.  Again thanks for all you do for all of us.  You and your family are remembered in our prayers.  Cathy

Re: Mets to lymph and/or bone marrow?

We saw Gerry's new oncologist today.  He is monitoring white&red blood cells and platelets every two weeks.  Gerry has had many bouts of pain, fever, night sweats, naseau and bile in urine since his resection back in April.  Since only liver function tests, platelets and lymphocytes are abnormal the Dr. feels he's only having these problems because of chemo/radiation and his slowness in healing. His chemo/radiation ended in early August and his platelets were at 126 and went back up to 196.  I'm not sure if I believe the Dr.'s theory because he's not having good times between the bad anymore.  He's constantly very fatiqued and having to take strong meds for the pain every 6 hours.  Am I just being protective?  Does it take this long to heal?  At least this Dr. is monitoring the situation and Gerry has another CT scheduled for Dec. 3.  Gerry is also working(light duty) fulltime but doesn't make it thru a full week and then sleeps all weekend.  His boss is very understanding so we're grateful for that.  Work is good for Gerry emotionally but I'm concerned this is too much for him physically.  When do you know it's better not to work?  Thanks for being there!! Cathy

Re: Mets to lymph and/or bone marrow?

Dear Cathy, I would have thought he should be feeling a bit better by now.  But when you said he is working that answered my question. Even light duty or using the mind can tire you out pretty quick.  I stopped working When I started Chemo as I found myself just from habit pushing myself to much. What would otherwise be a normal day really can wear ya out at least it did me.  CC he should apply for SSDI as soon as possible. 3-5 month waiting time for approval usually quicker results with CC patients.  Retroactive from date of application so sooner the better the back pay will come in handy for some .
God Bless,
Jeff G.

Take it to the Limit,One More Time! (Eagles)

Re: Mets to lymph and/or bone marrow?

Cathy,
I'd like to echo  Jeff's sound advice.
I quit working once I was hospitalized while on chemo.  I believe this has been a component in my present state of doing quite well.  I've drawn a long straw for the moment but we all know this beast of a disease just doesn't quit and go away.
Not being exhausted by trying to work, not having the  stress of being in a hurry nor the stress of the job seemed to give my body and immune system a little more reserve to fight the cancer.  I am fortunate that my company has a disability policy I have been able to use.  That will run out soon however.
Best wishes to both you and Gerry.  May you have some good times ahead of you.
-Peter

Re: Mets to lymph and/or bone marrow?

Gerry has been recieving 20% disability for athsma and PTSD from VA and has applied for more due to the Cholangiocarcinoma. We've been waiting for the VA to process his claim so we have a bit more money to make it thru the waiting period for disability when he's not working.   He  works for the government and can file for disability retirement thru his employer.  He recieved paperwork to do this but don't know if it would be better to do this or just file SSDI.  Disability retirement would ensure I keep my health insurance.  We cannot recieve all three benefits but understand we have to file for SS in order to file for disability retirement.  It's all so confusing and when Gerry has to do all this on top of working and being sick.  Well, it's hard.  Thank you both for your advise and I will pass it on to Gerry.  I think when he  stop working he'll maybe be able to feel better.  He has been such a wonderful provider for our 36 years of marriage and I know it's hard for him to not be able to work as hard as he always has.  I told him he deserves to be able to do the things he wants while he can.

Re: Mets to lymph and/or bone marrow?

Dear Cathy -- I can't even imagine how Gerry has the stamina or the will to go to work while he is battling this disease. He needs every ounce of energy that he has, plus time to rest and relax when he needs to. Do hope he can get the disability leave soon. My heart goes out to both of you. God Bless.  ~~  Jean

Re: Mets to lymph and/or bone marrow?

Thank you Jean--It's sooo hard to watch the love of your life go thru this.  It's so frustrating because we go to the Drs. and they tell him he needs to keep working as long as he can.   The VA is also sooo slow to make decisions.  We went to our state representative here in TX to ask him to see where the VA is on his claim.  I don't know what we'd do if we didn't have family support. However, they don't have the perspective and objectivity you all have simply because we face the same beast in the storm. Thank you for that!!  Hope we can be of help to you thru our experiences as well.   Cathy