Today's Oncologist Visit - 11/20

Long visit, lasted over an hour.                                       

 

Met with my doctor, plus a new oncologist who specializes in unusual problems/situations, and a new oncology pain manager who was a NP.

 

Had my PSA taken, only reason was in case when I meet with the VA if they wanted a more current one.  I may post the results here, more curious than anything.  One in April was 64.x, so my guess, is that its around 80.  Anyone care to make their own guess?

 

The pain specialist said my case was unusual in the amount of pain I have been dealing with.  She said most cancer patients don’t reach these levels of pain until they are in the end stage in hospice, and then, its usually only in terms of weeks or a few months.  Not the 3 ½ years I have been dealing with severe pain.

 

The new doctor wants to do some special MRI’s on me.  They are to be done on December 3^rd.  She wants to see the insides of both hips.  Will be done without and with contrasts.  She had a theory, that in some cases, the cancer can spread to the marrow in the bones, as opposed to normal bone mets that show up on the surfaces of the bones.  She has also ordered bone density tests, something that has never been done on me before.  She was very concerned about my hips just giving out without reason.

 

My doctor ordered a script for me so I can get a rolling walker as soon as possible.  Said that if I were to fall and break a hip under my circumstances, it would be a long and difficult recovery for me.  Hope to have one by the end of the week.  Going to have to forgot about any pride issues.

 

This was my first time at Gibbs where they were using a team approach with me, and I must say I liked it.

 

In a mind blank, may add on to this post later.  I see my doctor again on December 4^th after the MRI’s are done.

 

David

 

 

 

 

 

Thanks, I have always just seen my oncologist alone in the past, and no problem with that. But today, the new doctor was bringing the oncology pain specialist up to date on my case. So between both of them, they did a lot of examining me and my huge file.

They all agreed that I had a complicated PC case going on, and that I was chocked full of special issues.

Was also told, that when my VA medical kicks in, in a few weeks, that I will be able to choose to stay with my existing oncologist, which made me feel better. They said in most cases, my Medicare would be my primary, and the VA would be the secondary insurance. Either way, I should be well covered

David

Hello Purgatory....sounds like a good visit...and a more positive look from the doctors involved......I like the "team approach"......they can "bounce off" each other on different approaches to take in your case......

Been keeping a ear & eye on your posts.....so good to hear a positive posting about your situation...

Sally

David,

Glad you had a good visit today. Praying for you and that you'll get the treatment that you need to help make you feel much better.

Take care,

Dave

David, I am so glad at this new approach (the team approach), and the fact that you will have the MRIs and a bone density test - both make complete sense and hopefully will yield some clues as to what is going on. Good luck with the tests and with the walker. It's an adjustment but I suspect that you will feel much safer once you have the walker.

Sephie, thanks my friend. No one had ever suggested the bone density test before, the new doctor seemed surprised. She was kind of "trouble shooting" my wide array of problems, that on one hand seem disconnected, but on closer examination, may very well be giving clues and symptoms. My fear of falling now is greater than my pride using a walker. Hope to have one in hand by end of the week.

AN, I believe this exactly what the new oncologist is thinking. She is thinking beyond PC and the damage from it, and wondering if something more serious is going on that's been naturally missed. She was very sharp and probing in a good way. And asked me questions that told me she was thinking outside the normal box. I may not like what is found, but I want answers, regardless.

David

thanks, Dotson

I began experiencing steady chronic pain in july of 2010. there has never been a single day since, that I have not lived with constant pain, despite being on various amounts and mixtures of pain medications. and the pain damage has been spreading in my body since then, covering more of my body.

I either have "normal" pain days, or "severe" pain days, very subjective. on the most severe moments, when my entire lower back and both hips and legs are throbbing, I will be honest, I turn white with pain, get near a panic state - especially if alone, and there are times it will bring tears to my eyes. and I am usually a tough person.

worse part to me, is that what is wrong is not curable or fixable, so living with pain this strong for so long already, and with little hope for the future, I am amazed that I stay in as good a mood as I do.

the new oncology pain doctor is going to evaluate my pain situation and see what changes or recommendations she can make to my oncologist.

like she said yesterday, most cancer patients don't suffer this much pain until near the end, and then, its usually a question of weeks or a few months at most, not years of severe pain, and by then, they can be pumped so full of morphine, that they can rest pretty much pain free. I still need to be functional, not in a doped up state. I am only 61 and still trying to live a full life, as much as I can.

people outside the CP Chronic Pain world have little understanding of what it means for someone to deal with major pain 24/7, unless they are caring for someone that is in that much pain.

david

sephie,

the MRI's are scheduled at the scan clinic next door to Gibbs, on December 3rd. She said the results will be in my doctor's hands when I see him on December 4th.

how is a bone density test performed?

david

thanks for the info, 142, this is a new one to me

absolutely, sure don't need any new or more serious issues to deal with, so hoping for the best.

got other weird neurological quirks going on. my left hand (I am a lefty) has periods of random shaking, I can't control it when it happens, and sometimes the middle finger on my left hand goes numb, or tingles or makes the hair on the finger stand up - really weird. Doesn't hurt, just odd.

And the tip of my tongue is still completely numb without feeling a week later. No burns, no injuries, no dental work, just numb. Doctor's yesterday were puzzled about that one, had no possible explanation.

david

David, good to know a new team member on board and discussion on other reasons for your pain, looking for answers for you. I agree that the pain you have described in other threads sounded like late stage, but your complications from earlier treatments were exceptional too. If your neuro symptoms are not from medications, I hope your docs will check further. If you are not on HT, its not surprising that bone density was not included before. Osteoporosis is a major side effect from HT.

Will the MRIs include head to toe scan or full body bone scan? When Mark's docs saw his results on the skull and upper spine from the bone scan and the brain mri, they agreed that his neuro symptoms could be from bone mets pressing on nerves, not specifically brain mets or other neuro conditions.

You have all of the insurance lined up, whatever your choice for care, not a lot out of pocket for you. Did you also enroll in the medicare part D or does the VA cover rx from your non VA docs?

Keep fighting and opening up to your spiritual side if that is helping you.
Pat

David,
I’ve not been at HW that much lately so glad to see a succinct update on your current “Status”.
Your unexplained pain is yet another thing that makes your juorney so different from everyone else’s. I am reminded of the pain the actor Sam Wanamaker suffered with towards the end of his life with which he struggled so much. (He too was a PCa guy)
Have they every tried any tests with you with what I can only describe as excessive amounts of strong pain meds (like morphine) to see if there is something which, at a high enough dose, will indeed reduce the pain to a bearable level or get rid of it all together.
These bits of numbness you describe are reminding me of something I read earlier in the year that some neurological issues were put down to people having too much of certain artificial sweeteners such as Aspartame. (Numb teeth, leg pain etc were mentioned)

Earlier in the year I had some really bad prolonged pain in my right shoulder, I often got stuck in bed or in a chair as it was too painful to move. One of the few things that helped make it better, even i fit was often only temporarily, was to manouvre a massage vibrator slowly around the area until it seemed to hit a spot that would suddenly alleviate the pain. This was very useful just before bed time as most evenings it was enough to help me get to sleep without the pain disrupting me. (Vibrations of some sort clearly helped as I was also surprised that driving would make things better rather than worse – and with all the bumpy brick roads here in Holland driving is definitely soemthing that invovles vibration even with good suspension!)

As ever I hope the tests resolve this for you.
Alf

David

I'm always checking here to see how you are doing. I hate that you are having continuing and worsening problems. It's good that they are going to look into things a bit more. It can be a good thing having a new person on board with new ideas. Hope the tests show something easily dealt with, and nothing serious.

Thinking of you as always

Jane