Rob's update since his chemo

 Hi everyone. We no longer know what to think. As i posted Rob felt like a new person after his transfusion. He had his chemo this past Thurs. and has gone downhill since. Right after chemo he started having more pain and since his pain has escalated. i called chemo dr. and he prescribed hydromorph contin 12 mg. every 12 hrs. he can still take his hydromorphone which are 2mg. and he can take 4 every 4 hrs. These can also be taken before the other pain med. or during the 12 hr. that the new ones are supposed to cover. the new ones are a slow release pill and take 45min. to start working. Well, he has been taking pain meds. a lot. We are so confused. When we saw the chemo dr. last mon. he said that Rob might have more bone pain but never said why. When he had chemo the nurse here also said that he may notice more pain. When i called the chemo nurse in sudbury about the pain she said chemo isn't doing this, that chemo doesn't do that, something else. Also during chemo his face became so red i was scared. his blood pressure also went up to 158 over 90 but the nurse said that some people get so anxious due to chemo, that this is normal. The nurse in sudbury said that the prednisone is making face red. when i had his prescription filled i mentioned his red face to pharmicist who said right away that this can be a reaction to chemo and maybe he can't tolerate it. if it's the same Mon. call dr. So we now have 4 different opinions. Is it possible that the chemo has caused a flare up and if so why? Since last Tues. he has started on Prednisone, had Dexamethasone  (6 pills) day of chemo, had a blood transfusion, and started chemo. Is it possible that his body is just reacting to everything put in it in such a short time. Don't know who to believe. Is there a chance that the pain will subside after a few days? Just know that he is the one going through the pain and at this point i don't know what to do or who to call. If they don't know why, find out, but when two different people say he might have more pain are they right. He also has increased weakness since chemo. He can't even open a bottle of water. He was a strong man, but yesterday in the height of pain he broke down. If he can't get this under control, he will give up. i can see this happening and i can't even blame him . who wants to live with this kind of pain. I feel like i'm talking to a wall when i call dr. and i don't know what else to do. any ideas. thanks everyone  lifeline

Dear Lifeline,

You need to have a frank talk with Rob's managing physicians if you have not. Somebody isn't talking or else, not listening. Rob's cancer is wide spread and should be managed as such. Making the poor guy comfortable is job number one at this point. As hard as you are trying, Lifeline, you need some help. It may be time to consider pain management skills that hospice can help provide. Whatever can be done, should be done to keep him as pain free as possible. Enough pain control to do some of the things Rob wants / likes to do would be a blessing.

Lifeline, hate me later.....or now if you want. It's okay. Be angry. Be whatever you need to be but please, call the Doctor. Hospice is good at helping manage pain. What you need right now is a hands on support system, not false hope. The forum is here and we will stay close by. What we can do from this end is pray and listen. How I wish we could do more.

As much as you feel the Doctors aren't helping, they are. From your posts, Rob's Oncologist appears to be trying, or has tried everything humanly possible. The Doc is making a good attempt at pain management. I'm sure he wishes he could do more. Everytime I read you posts I hear how much the oncologists are trying. They just aren't giving the answers nor getting the results we all want. My thoughts and prayers are with you and your family.

Big hugs to both you and Rob,

Swim

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Lifeline,

May I echo Swim's comments. She states it better than I ever could. When talking with my oncologist, he is very open about how there a many things he can try, but has no clear cut answers as to what will work. But, like your doctor, he is trying everything possible. We just have to keep praying. I pray that Rob will find relief and comfort. I pray that you will find peace. Rob is at a stage in his fight that needs the help from all his doctors, working as a team. His comfort is the most important thing. Hospice would be good. As Swim said, get his primary doctor to take charge. We all love you so much.

Peace and love,

Walt

Lifeline-

First, you are doing SO much and we all know that all of us would go to the ends of the earth for our loved ones.  I hope you can find peace in the fact that you are AMAZING and doing everything you can and know to do...even if it feels like it is never enough. 

I hope that Rob's doctors can recommend some type of pain management and get the pain under control.  I too wish I could give you a big hug and I hope you can feel all of us pushing you up and forward in this fight.  My thoughts and prayers are with you both.  Keep us posted!

Chayna

lifeline,
The ladies have given you some very good advice.  We are really hoping that somehow we can gather up all the right answers here and get them to you. But my best offer is prayer that the doctors can pull together and improve Rob's pain. God Bless you both.

Tony

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Age 45 (44 when Dx)

Dear Kathy & Rob,

 

Please ~ reach out to Hospice…. They will help Rob with the pain and they will be an additional support system for you.  They truly are a special group of individuals.

Many months after our surgery ~ I made myself read the final chapter in Dr. Walsh’s book.

Chapter 12…Help For Advanced Prostate Cancer.  I needed to know what all the stepping-stones that make up the path when dealing with prostate cancer. 

 

I’m re-reading it right now and these are a few excerpts ~ I hope they can help guide you as Swim has above in her heartfelt posting above…. 

 

** Excerpts taken from

“Dr. Patrick Walsh’s Guide to Surviving Prostate Cancer”…(Give Yourself a Second Opinion) Copyright 2001

Patrick C. Walsh, M.D.

Professor of Urology, The Johns Hopkins Medical Institutions and

Janet Farrar Worthington

 

Help if You’re in Pain….

“Pain is very closely associated with quality of life”

“People in pain have a reduced appetite; they lose weight.  They’re often depressed.  Sometimes they’re bedridden, the pain is so bad.  If we control the pain aggressively, we often see patients getting stronger and eating better.  Aggressive pain management is clearly to the patient’s benefit”.

 

It’s not only beneficial, it’s your right as a patient not to suffer

 

The bottom line is that you -– or a loved one with prostate cancer—do not need to suffer terrible pain.  There is help available. Take it.

 

Another option is to contact the national Hospice Organization, a group whose goal is to “enable patients to carry on an alert, pain-free life and to manage other symptoms,” so their days “may be spent with dignity and quality at home or in a home-like setting.”

<end excerpts>

 

Kathy ~ continue reaching out and now reach a little further for local support.

Know we care….  Gentle Hugs and Warm Thoughts surround you.

In Friendship ~ Lee & Buddy 

I hope I don't get in trouble for saying this.....but...what about medicinal marijuana? Just a thought. 

Lifeline,
There's not much I can add here, except you both have my thoughts and prayers as well. Making Rob comfortable would certainly go a long way towards him NOT giving up! Make sure his doctors understand that. And also make sure you take care of YOU, too!
Best,
Mike

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June 2005 - Age 53 PSA 4.8 at regular physical October 2005 - After several rounds of anti-biotics, PSA 5.2 at Urlogist November 2005 - Biopsy negative July 2006 - PSA 5.9 at regular Physical October 2006 - After several more rounds of anti-biotics PSA 8.1 November 2006 - Second biopsy - Positive December 2006 - Gleason (3+4=7), Tumor T1c, CT Scan and Bone Scan Negative
January 2, 2007 Robotic Prostatectomy, University of Rochester Medical Center - Tumor confined but larger than thought, only one nerve able to be spared. Margins clear. February 2007 - Three to fo ur pads a day, no erection with viagara. April 2007 - First Post-Surgical PSA 0.02. Down to one pad a day.July, 2007 - Six Month Post-op: PSA 0.04 No change in ED. October, 2007 - Nine Month Post-op: PSA back down to 0.02!Almost totally dry! Only slight improvement in ED - Will try injections if not improved by next appointment. January 2008: One Year Post-OP PSA 0.02 still dripping, but improving. Tried 500 dose of MUSE for ED, no luck. Will try 1000.

Kathy,

So often we find ourselves in a place we can't and shouldn't handle on our own. Now is one of those times and you are there. Myself and everyone here wishes we could change where you are right now. We can't do that but we can stand by you. Swim gave you her honest appraisal of where you are. She knows. As you have read by now, others in this forum have joined in to confirm her advice to you.
Loving your husband as you do, I know you don't want to ask for that help, you feel like it would be giving up but it's not. The need is there. It will help Rob. It will help you.

Please know we will be here for you,
Susan

Hi Kathy,

Everyone here has said everything that needs to be said. Its time to call hospice and get the help you both need. If only love could take away the pain, none of our men would ever feel pain again. You & Rob are in all of our prayers.

Diana

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Rick & Diana

Dear Lifeline,

Please know that MaryLu and I are hoping and praying for you and Rob.

Jim

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Age 73. Diagnosed 11/03/06. PSA 7.05. Stage T2C Gleason 3+3.

Lifeline

You and Rob are in my prayers and hopefully this week can bring you both some answers and comfort from the pain.

Norskie

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norskie

Lifeline

How come I start bawling whenever you post here.

Anyway, I just would like to echo the posts here on hopsice.

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52 Year Old DBA by profession; amateur pianist by passion.

Lifeline

How come I start bawling whenever you post here.

Anyway, I just would like to echo the posts here on hopsice.

You are in my prayers

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52 Year Old DBA by profession; amateur pianist by passion.

I'm glad you are keeping us informed about what is going on with Rob.  It is heartbreaking to read about how much pain he is in.  As others have said, your physician should be informed and get involved in pain management for Rob, perhaps using hospice.  You are both in my prayers...Tim

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Age 59 PSA 2.6 PSA velocity quadrupled in 1 yr 

lifeline,
Has many links for pain management. Check it out and see if it can give some ideas.

http://www.psa-rising.com/caplinks/medical_paincontrol.htm

Tony

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Age 45 (44 when Dx)

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Dad Diagnosed with PC in Summer 05-age 60-PSA 4.0

Thank you sooo much for everyone's response. Since the last post, 2 days later Rob's pain started to subside and has since subsided immensely so I guess (again) I panicked and expected meds to work immediately. The Hydromorph Contin seems to be working well. Only problem is that Rob is having hallucinations with this med and upon speaking with our pharmacist this is a normal side affect. Some people can put up with them while others hate them. She suggested I contact our dr. and ask to try something else. Rob hates them so tomorrow when i see my family dr. I'll ask what else will work just as well without the hallucinations. Rob had his chemo last Thurs. and on Sat. at 3:00pm he went to bed and was able to sleep until 10:00pm. Around  2:00am next morning he started vomiting, every 4 hrs. like clockwork. Gave him another Kytrill which was prescribed for day after chemo, but it didn't work. By around 6:oopm Sun. vomiting stopped, but felt nauseated every few hr. From the Thurs. after chemo till Mon. he hadn't ate and was only drinking water and ginger ale (flat). Temp. started dropping and at it's lowest was 34.5. Urine also extremely dark due to dehydration. He kept dropping off to sleep so fast it scared me. I mean he literally comes back from the bathroom and within seconds he's snoring. Fell asleep in the middle of drinking water, so more ph. calls to which I was told this was due to dehydration and the fact that he finally stopping the vomiting and his pain had subsided. Totally exhausted.  This according to the chemo nurse. At one point he scared the xxx out of me. He had thrown up and called me in saying I should check his urine. opened the door and looked at a toilet full of dark brown liquid (I mean really dark). Told him we are going to hospital now! I didn't know he had been sick, just thought he peed. Then he tells me he had thrown up. Boy, was i relieved and also a bit mad. Scared me for nothing (was told due to deydration)  Earlier he had tried to drink a smoothie i had made with fruit in it and he couldn't keep it down.  Late Sun. his temp started to rise and he was drinking a lot more fluids. Mon. he started eating yogurt, a bit of fruit and ice cream( he asked for it). Called nurse and she ordered another type of anti-nausea pill. Thanks goodness we have a friend who has been a paramedic for a long time and my daughter called him (don't know why I didn't think of that). His wife is also a nurse. He told me what to watch out for (low temp and dehydration etc..) On his advice I bought a case of Ensure Plus (extra calories) and some Pedialyte for him. The ensure is a meal replacement with everything in it that he is missing when not eating and the pedialyte replaces the electrolytes gone from the body from vomiting. Again don't know why I didn't think of this since when my mom was sick I got her this stuff.  Since Mon. he is drinking more, and today woke up earlier and eating fruit cups, applesauce, yogurt, and drinking the Ensure and Pedialyte. Still not hungry for solids. He is staying awake more and his temp. is still coming up. He can now get up without my help and is starting to make himself walk around the house a bit to try and strengthen his muscles. The muscles in his hands are really weak and he still can't open or tighten much. this really bothers him. I have a book on side affects of chemo and i've read them. It seems that he is one of the people who have the less common ones. It was so hard on him being so sick and weak. I never felt so helpless. These 4 days after chemo felt like a lot longer. Thanks God he is coming out of it. He has to go for his bloodwork that dr. wanted 10 days after chemo this Fri. or Mon.  Fri. I expect is when his white blood cell count will start dropping so we will go that day before they really drop,than he won't have to go into the public when they are at there lowest. We were told by the nurses that he can go out just to be careful not to be around sick people and stay out of public places during peak times. I know Rob will eventually want to go out, I'm just scared he will pick up something. I'm starting to feel like a disinfectant bully. Every time we touch something i disinfect it. Walking around with my bottle of javex and water and hand sanitizer. I will take all of your advice and look into hospice. I'm scared to do this as to me this means he is at the end. Isn't that the only time you request hospice? Maybe i have a misconception of it.  I'm finding out that we have friends i forgot we had. One friend bought a case of ensure and pedialyte, my daughter and son -in- law who has MS came out and did our drive way for us (we got a lot of wind blown snow), our paramedic friend told us to call him anytime and has alerted the other paramedics in our town who drive ambulance about Rob in case we need one (trying to make it easier for Rob) since he knows that he'll fight it every inch of the way. My daughter-in-law's mother is a nurse in emerg. so if she's working she will call her if we have to go. As usual there are times when everything else also goes wrong. Rob is a mechanic so of course he has always maintained our used vehicles. Now our snowblower motor blew,(son-in-law will try to fix it)  my truck needs some parts replaced now, my cars heater motor blower hasn't worked for the last 3 wks.  and i have to now do the mechanical repairs with his guidance. the car will be the worst. Due to our son's back injury he can't even drive (pain meds. he's on) let alone help with the physical work but will try to help me with guidance but our daughter-in-law would have to drive him. Only problem with this is that my daughter-in-law takes our grandson everywhere including emerg. to visit her mother. Problem with this is then she is placing herself and my grandson in jepordy of picking up any infection that's there than bringing it to us and my grandson gets sick easily.  Spoke diplomaticaly to her about this since we would like to see them, but she is the kind of person who likes to go out. She's been great throughout this, just doesn't always think about consequences sometimes. At this point living in the country doesn't seem so great but moving into town isn't an option for us so i will keep praying for the dear lord to guide us. Of course i can never forget the dear friends here on this site that i have made and I can never thank you all enough for your compassion, patience, strength, and hope, hand holding and prayers that you have shown us. Without you all i know that i would not have made it this far. I am truly blessed with all of you. I didn't mean to make anyone cry so i'm sorry if i did. You are all a true gift sent to us from heaven and all of you continue to be in my prayers.  Sincerely, Lifeline