forHerbie update--10/10/12 - 1248918

forherbie
Posts:50

It has been several months since I updated on Herbie. Reason for not posting ---one brother died post Open Heart surgery and other one had an above knee amp and is in long term Nursing Home.

Herbie has had 3 CTs. There are several new bilateral lung spots growing mms after each scan,
a 1cm growth in mid R kidney (just watch since kidney Ca is slow).
Blood in sputum was becoming bright red. No other symptoms.

Due to above he had a pulmonologist and urology appts. Not able to keep appts because---- 3 weeks ago he lost his balance while using his cane---stumbled backwards breaking his left femur just below the acetabulum. Stabilized with a rod in medullary canal and 3 screws to hold it in place.

In the hospital he developed an almost continuous cough with thick glue like sputum (hard to cough up). A chest CT revealed R pleural effusion----thorethentesis removed 800cc fluid----tested fluid---- came back as malignant cells. Also has pneumonia. Removing the fluid reduced his cough.

He was on Internal Med service with Oncology consults. Because of prognosis of malignant effusions the Med. docs started giving him the bad results ----saying he should be on Hospice. Thankful Herbie is hard of hearing and didn't hear that. I told them to not talk to him since I wanted his own Oncologist (who he has a great rapport with) to explain results to us. Well when just my daughter was with Herbie the Med resident started talking in front of Herbie again.
Next day resident called me calling Herbie "an old man" "stop the Tarceva--it's not doing him any good and can't take any more treatments." I told her we prefer to only talk with Herbie's Onc who wants him to cont Tarceva and she isn't a Debbie Downer, Not sure she picked up on DD or how mad I was at her.

He is now in rehab. Sorry this is long.

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Reply # - October 10, 2012, 08:42 PM

laya d.
Posts: 714

Thank you so much for your update. . .and I'm so sorry to read that Herbie's disease seems to have become more complicated. I am hopeful that Herbie will get some good rest while in rehab, will get some of his strength back, and that his Onc. can assess the situation and deliver whatever news/treatment plan//thoughts are appropriate to him.

I have to tell you that in coming and going into what seems like dozens of hospitals and doctors appointments, etc. with my mom these past few weeks, it seems to me that the docs who come in to deal with an acute situation tend to have (or at least they tend to articulate) a much more pessimistic view-point than the Oncs./Docs. who are treating and managing the patient longitudinally. I think in many of these situations, these "temporary treaters" (as I call them) are much more textbook about the situation and don't necessary know or appreciate the nuances of a particular patient's disease (that the patient's regular treaters obviously know about). I try not to blame them for this, given that I understand that they are seeing and treating my mom in a vacuum. I also find that many of these "temporary treaters" do not developed the rapport that the patient has developed over time with her longitudinal treaters - - and therefore, conversations tend to be a lot more curt and blunt.

Anyway, I wish you and herbie all the best. . .and please keep us posted.

Laya

Reply # - October 10, 2012, 09:32 PM

forherbie
Posts: 50

Thanks for the reply Laya. The more "pessimistic view" hit the nail on the head. When I related the Internal Med situation to Herbie's Onc ---she said a lot medical docs think folks should be on hospice when they first learn they have Ca.

Tomorrow we will see pulmonologist---get a chest xray---so will see if/or how fast fluid is returning. Also hope to get a clearer prognosis of his malignant pleural effusion. From what I have read prognosis is from 4 to 6 months of course I have not said this to Herbie. I need more info from his doctors.

Reply # - October 11, 2012, 12:43 AM

certain spring
Posts: 762

I too am sorry for the loss of your brother, and for the tough time you have been having recently.
I agree that for every doctor who is tactful and kind, there is one who is insensitive - and I think Laya is right that these are invariably people who encounter the patient out of context.
I remember being in an acute medical ward and hearing the ER doctor saying loudly to a troop of medical students, "She has very advanced lung cancer, you know". The entire ward could hear. I felt so angry and so powerless. I am very glad your husband has you to fight his corner. Hope he feels better soon.

Reply # - October 11, 2012, 07:41 AM

catdander
Posts:

My sincere condolences to you and Herbie on the loss of your brother. Also I hope your other brother is doing better and is comfortable in his new surroundings. You are going through an awful lot of hardship I hope you have help for yourself both emotionally and physically.

I'm so glad you have written us with an update on Herbie. Of course I hate to hear he has had such a difficult time lately. I too hope he has a chance to heal, rest, and get his strength back while in rehab.
It is really intuitive of Laya to find a theory for the attitudes of the temporary treaters. They see them as the large statistical group and not the individuals they are. Interesting. We teach our readers that you can't look at an individual as the median number of a stat group and the temp treaters do the opposite.

Don't forget that the prognosis from the malignant PE is a stat from that large group of people that doesn't mean Herbie will fit into. Many people here have lived years afterward.

Let us know how the appointment goes.
Janine

Reply # - October 11, 2012, 10:32 AM

sherrys
Posts: 212

I'm sorry for all that you and your family are going thru. It has to be so hard on you.

I also want to tell you about my dad. He was diagnosed in December of 2009 at stage IV with a pleural effusion. It was drained at the time and has never returned. He was on Tarceva for 2.5 years and then was switched to Alimta this past April and he gets it once every 3 weeks. I even questioned on here whether he should even try the Alimta.

My dad turned 83 on September 30. Hang in there and know that we are all here for you, thinking of you, praying for your family and ready to lend an ear if needed.

Reply # - October 11, 2012, 04:20 PM

Dr West
Posts: 4735

I really just wanted to say I'm thinking of you as well, and I appreciate you coming back to provide an update. Even if we can't offer much more than support from people who can relate, that's still something.

-Dr. West

Reply # - October 13, 2012, 07:04 PM

forherbie
Posts: 50

Onc and Pulmonologist appts

Onc says cont Tarceva until their clinic receives afatinib (expected soon). After that she might consider alimta. Also said ask for hospice to take care of some of the physical personal issues Herbie has when he gets out of rehab. Ultra sound on fractured leg was negative for clots.

Pulmon. noted from the AM chest xray his RM & RL lobes are collapsed and he still has a lot of mucus in the lungs. Ordered antibiotics, flutter valve device ( the vibrations caused by intermittent air flow though the flutter chamber loosens mucus and secretions for the patient) and increase nebulizer use. Return in 4 weeks.

He didn't state how much fluid he saw and he didn't mention a catheter to drain it. I didn't ask their opinion of severity of situation because I still do not want to alarm Herbie while he is concentrating on his fracture rehab.

I haven't read up on afatinib----is anyone here taking it? Also all info is welcomed.

Reply # - October 25, 2012, 12:24 AM

forherbie
Posts: 50

Thanks Jim for the afatinib sites---I see that hasn't proved to be real good.

After 3 weeks in rehab physical therapy has worked slow with him so actually he still can't move very much. There is no coordination between PT and floor personnel. The floor folks don't get him up unless we are there.
Oct 22 at Ortho appt the xray showed there is another break at distal end (above the knee) in same femur. The xray immediately after insertion of the rod shows no break but does show the distal end of rod is very close to anterior periosteum (hard outer layer of bone) and this is where new splintered fracture is. Due to Herbie's many problems the Dr put him in a long leg brace to heal on its own instead of adding a plate to the area. Herbie has no recollection of pain or when this happened but they suspect during PT. For another month he can not put any weight on the left leg.

Reply # - October 25, 2012, 11:40 AM

catdander
Posts:

I'm so very sorry to hear this. This is such an unforgiving disease. I wish the best for Herbie and that tomorrow will be a better day.
Janine

Reply # - October 29, 2012, 12:17 AM

forherbie
Posts: 50

I'm at my wits end--what to do now?

Oct 23---Ortho appt---noted 2nd break---Dr said okay to take Herbie home. I told rehab folks all of this info.

Oct 24---Rehab---Herbie's Care Plan Appt. Again I said we were taking him home. Physical therapy reported
Herbie was not progressing with PT (and medicare wouldn't pay for further sessions) so he could go to Long Term area of nursing home. This was the first I had heard concerning his not progressing. I told them there was no continuity of PT with the floor personnel. I wonder if PT did this since they knew the afternoon before that Herbie had a 2nd fracture.

My plan was to use Home Care with PT 3x/week as Ortho Dr approved. Question now is will medicare pay for rehab at home? I don't expect him to walk as he did before fractures but at least be able to help with transfers if at all possible. We wanted to bring him home before the malignant pleural effusion gets worse.

Then there is Hospice that I need to talk with to understand their limits/rules---can he continue with his same pulmonologist and med. onc.?

This sudden stop of PT (with no advance warning) is the same way this nursing home did my brother who had an above knee amputation. Also this is one of the better choices in our area.

Excuse the rambling---I don't expect answers from you----just writing my frustrations.

Reply # - October 29, 2012, 08:36 AM

double trouble
Posts: 573

You're not rambling. What an ordeal. I am so sorry to hear all of this. Is there any possibility that you could access a Patient Advocate, or a Social Worker, to help you pull all of these different entities together into a cohesive manner? Maybe that role would be fulfilled by hospice, I don't know. I can tell that you're exhausted and need some support yourself. I wish I could give you at least a long, good strong hug. You deserve one. I'm so sorry about the loss of your brother, too. Just try to remember that you have a wealth of people here who may not be able to jump in and fix it, but we can send prayers and vibes, and be an ear if you need to rant. Please keep us posted.

Much love,
Debra

Reply # - October 29, 2012, 08:43 AM

catdander
Posts:

Just want to send much support and wish I could help in some way.
Debra's, as usual is right about it all, including that you need an unbiased advocate to help bridge all the medical pros into one cohesive plan.
Don't worry about feeling like you are rambling, you're not.

Janine

Reply # - October 29, 2012, 02:12 PM

Dr West
Posts: 4735

I'm sorry there's so much turmoil there. I can at least say that hospice folks should not have any problem with having him continue to work with his current doctors as long as they're providing assistance.

Good luck.

-Dr. West

Reply # - October 31, 2012, 11:59 PM

forherbie
Posts: 50

Thanks for all your replys. Debra---you right the social worker at oncologist's office was very helpful. My daughter and I decided to go with home care which I am more familiar with instead of hospice. In talking to hospice repts we got different answers from what the social worker had told us. Right now I trust the PTs who work with the home care group I chose, to see if Herbie is physically able to help with transfers from bed to wheel chair, etc.

HERBIE IS COMING HOME NOV 1st.

Reply # - November 1, 2012, 07:51 AM

double trouble
Posts: 573

I'm so happy to hear things are going better. Whenever I've been at my "wits end" I have called the social worker. I've only done it a couple of times, but she really knew what to do both times. Hopefully in short time you will have the transfers perfected. (Do they use a sliding board?) I think home is where most patients prefer to be, and I'm glad you're not taking it all on by yourself. Please keep us posted.

Love,
Debra

Reply # - November 1, 2012, 11:22 AM

Dr West
Posts: 4735

Well, that's today, so I sincerely hope that goes smoothly. I'm sure you'll both be looking forward to it.

Good luck.

-Dr. West

Reply # - December 26, 2012, 01:40 AM

forherbie
Posts: 50

Update again:

Nov 1st---Herbie came home. We (my 2 daughters & I) looked like the Keystone Cops learning to maneuver Herbie with the Hoya lift from bed to wheel chair and back again. He was bed ridden since there was no weight bearing on left leg and right leg was weak but we managed. Appetite decreased since fracture on 9/20.

Nov 23----My oldest brother died.

Nov 26--Orthopedic appt----Xray showed top femur fracture healed but knee fracture not---cont. with no weight bearing till Jan.
Onc appt----same day---late getting there---only had time to draw blood.

Nov 27---Brother's funeral. Onc called to take Herbie to ER since his potassium was 2.2 Admitted to hospital. I was a little late to funeral service.

Dec 1st---Herbie home with extra potassium. Rather cranky about taking his pills and depressed by dependency and being house bound.

Dec 16---Onc appt.---appetite stilldown----giving more Boosts. Drinks better than eats. Plan on a G feeding tube.
Forget afatinib----clinic could not get it due to expenses they had to pay. Thinking of starting alimta later.

Dec 18-- Labored breathing. Called 911---admitted to Oncology service. Pleural effusion elevated---took off 1 & 1/2 liters of bloody fluid. Fluid for culture was mislabeled and not sent to lab. Onc Dr. (not his primary onc) wanted to reevaluate Herbie's condition---ordered total bone scan (negative) and MRI of brain. MRI techs couldn't position Hebie's head into camera unless they could move his legs. Remember he still had a full leg brace and they didn't want to further damage left leg. Would reschedule MRI with general anesthesia.
Dec 21---Home. Due to holidays nothing would get done till day after Christmas so they sent him home.

Christmas Day Dec 25th----10AM---calling me to get him up (I was sound asleep) 10:45 was not responding---eyes rolled back--unequal pupils-- labored breathing. EMTs intubated him. Admitted.
Continue

Reply # - December 26, 2012, 01:54 AM

forherbie
Posts: 50

Update cont:
A CT scan and MRI of head ruled out bleeding stroke. Also no metastases noted. Pleural effusion is greatly increased. Neurology and pulmonologists will follow him. Before I left his eyes were open---now responding--looking all around----not sure if he knew me. Will update more later today.
I have nothing but praise for all who helped with Herbie today ---from the EMTs to ER personnel to all the nurses and doctors. We are so fortunate to live close to a major medical center.

I cancelled the hospice information/evaluation visit last week since he was in the hospital the day of appt.

Reply # - December 26, 2012, 05:54 AM

Dr West
Posts: 4735

I'm so sorry to hear of all he and you have been through in last couple of months -- as if everything with Herbie weren't more than enough, your brother's death as well -- but I'm especially saddened to hear that you had to spend Christmas with him so sick, being evaluated emergently. As you say, though, at least it was a blessing that you had the support you needed right there.

I hope you'll keep us posted. Good luck.

-Dr. West

Reply # - December 26, 2012, 03:28 PM

double trouble
Posts: 573

I'm sorry you're going through all of this, and am hoping you've been able to get the hospice team in by now. I know they would be a great help. You will be in my thoughts.
Debra

Reply # - December 28, 2012, 12:47 AM

forherbie
Posts: 50

Thanks for your concerns Dr West, Debra and Laya.
Herbie remains in MICU---keeping low BP up/stable is one problem---- he is breathing on his own mostly with ventilator tube still in place on standby----it only works if he doesn't breath----is given some pain meds---is kept sedated for comfort----attempted a feeding tube but stomach wall wasn't visible----started nutrition thru NG tube---is turned every 2 hours----pressure on heel and buttock remain a concern also.

Could only remove 250 cc of pleural fluid---it appears it may be loculated (in pockets ??). I'm not sure of the significance of this. They think his blood is septic---culture of fluid shows bacteria----now trying to determine type of bacteria. Is already on wide spectrum antibiotics. Hope tomorrow brings more answers.
Anne

Reply # - December 28, 2012, 09:23 AM

catdander
Posts:

Dear Anne, I'm so sorry Herbie is in this condition.
You have lost so much already this season. I know his comfort is your number one priority and I hope the ventilator and feeding interventions are being used to bring him back to a more stable and comfortable state.

The loculated effusion means that fluid is trapped in small pockets that can't be accessed from one point. I don't know what that means in his situation. But doctors don't often try to reach them all. Draining each one could be more dangerous and uncomfortable than helpful. Another awful part of the balancing act.

Keeping you in my thoughts,
Janine

Reply # - January 6, 2013, 11:08 PM

forherbie
Posts: 50

Final Update on Herbie

This is the hardest post to write---Herbie passed away, with us by his side, on December 30th. They never got to bottom of type of bacteria he had before his organs began to shut down putting too much strain on his heart. The medical onc. saw him on the 28th when he was doing so good--she was surprised he died. My daughters went thru all our picture albums to make a video with music which was shown at visitation and memorial services.

My concern now is (yes I am still 2nd guessing my decisions) could hospice have helped. I never got to talk to them---they called then I called back but we never got together. The last two weeks was rather chaotic-- we were at doctor's office, then hospital, then home on weekend then back to hospital.

I wish to thank Dr. West for starting this forum and all members for your support. I learned so much just from reading here.

Reply # - January 7, 2013, 12:51 AM

Jazz
Posts: 279

Dear Anne,
I am so sorry for all your losses. Wishing you strength and comfort during this terribly difficult time. Thank you for sharing your and Herbie's journey with us. Please take care of yourself.

Jazz

Reply # - January 7, 2013, 06:03 AM

laya d.
Posts: 714

Oh Anne. . .I am so very sorry. My heart is heavy for all of you. I wish you peace. . .and please don't second guess yourself. There is no point to it. . .

Laya

Reply # - January 7, 2013, 06:29 AM

catdander
Posts:

Dear Anne, I'm so sorry Herbie is gone. How terribly heartbreaking. I will keep you in my thoughts and wish and hope you will not let 2nd guesses enter into your thoughts. There is nothing you could have done differently, you tried to give him everything he needed but the disease is too horrible.
All my condolences,
Janine

Reply # - January 7, 2013, 07:40 AM

sherrys
Posts: 212

Anne, I'm so sorry for your loss. I understand the 2nd guessing because I have done that with my father's recent passing. But as Laya said, there is truly no point. Nothing would have changed. You were there with him, just as you would have been with hospice, and I know he felt your love.

Reply # - January 7, 2013, 11:33 AM

double trouble
Posts: 573

Oh Anne, I'm so sorry to hear this. I'm comforted by the fact that you have your daughters, and that you don't have to face this grief alone. It will get better.
Debra

Reply # - January 7, 2013, 01:57 PM

certain spring
Posts: 762

I am sorry for the loss of your dear husband, whose character came through so strongly in your posts, as did your love for him.
I think it is natural to replay what has happened and wonder if things could have been different. But I recognize your description of the chaos when someone is seriously ill. You are a loving and vigilant wife who has nothing to reproach herself with.

Reply # - January 7, 2013, 06:35 PM

Dr West
Posts: 4735

Anne,

It's so kind of you to come back to let us know. We can at least share your grief and express our sympathy.

I hope you don't worry too much about hospice and second guessing yourself. No good comes of that, and it's always easy to look back critically. We can only do the best we can with what we know at the time.

-Dr. West

Reply # - January 8, 2013, 02:16 AM

forherbie
Posts: 50

Thanks all of you so much for being here for the entire 2 1/3 years. I have told many folks about cancer grace site. I knew I could always get correct answers, encouragement and HOPE here. I plan to stay here---I've grown to know you and care about your journeys.
Anne

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