Jump to content

MY DAD...(update)


KatieB

Recommended Posts

Probably tired of hearing from me now...and I almost put this in the good news section....but not yet...don't want a jinx.

Dad's radiation oncologist is FANTASTIC..I will call him Dr. "Harvard".

He talked to me forever today about everything, all options, all possibilities. He listened to us and encouraged us not to ever give up the fight and that whole brain radiation beginning Wednesday, would most likely do the trick for dads little met! He also encouraged RFA and for me to meet with the surgeon. He talk with me, not down to me. He was very surprised to see that I knew what I was talking about and even suggested treatment options that he DID not think the average person knew about. How did I know that, I said....from my research and from the message board. And I told him about all of you!

Meanwhile, Onc. #1 is mixing up a new brew of chemo combos and dad will start that on Thurs. And at the same time as the whole brain radiation, the shoulder met will be radiated as well.

This only leaves the liver mets, which hopefully will be shrunken by the chemo -like before- and then Radio Frequency Ablation. I have found an expert in the field, right here!! I will see him to discuss this further once dad is half-way thru this new treatment.

Mapping will begin on Wed. so I will know more about how many rads. and all that -then.

It's disheartening how fast all this happened. And it seemed like dad was really losing it for about a week--but Dad felt so terrible due to the adverse reaction to the Oxycotin!! (He is no longer taking them...he will double up on the vicotin instead when he has pain) He was also severely dehydrated - add that to the brain met and that ='s confusion and weakness.

It feels SO GOOD to have a plan...We needed to have a plan, for about a week, we were completely lost without one. It soothes me to know that we are going to turn this situation into the right direction and get things back on track again.

Dad's on a steroid and re-hydrated now and is almost good as new...except we have a long battle ahead of us.

With Dr. "Harvard" on our side, my dad's extraordinary heroic spirit, and my anal-retentive need to stay on top of those doctors and learn everything I can about this disease and new treatments--and bug the heck out of them,.......... I do believe we have a chance here. :wink:

I want to thank all of you for your encouraging posts and gracious support to me during this low time in my families life. With so much DOOM & GLOOM out there and going on in our heads when dealing with this disease, I truely see how special you guys are.

Please keep dad in your prayers, he's got one heck of a bumpy road ahead! And I will keep praying my extra prayers for all of you!

Link to comment
Share on other sites

Katie, I am so very happy to hear about the plan you have mapped out and the renewed hope. You are such a wonderful daughter and a source of inspiration to me. Your dad has such a strong support network and this will help him in his continued battle. He has beaten odds that I know in my heart he will continue to beat them. I am glad to hear you have a strong faith in his radiation oncologist. I know my mom and I really like hers. He has given us so much hope. I continue to hold you in my thoughts and prayers. This flight will be bumpy but with you as his copilot he will go great distances. All my best to you.

Link to comment
Share on other sites

Katie,

My prayers are sent out to God for your Dear Dad. I am so glad youv'e got a plan! I went through an awful wait right before treatment and felt helpless to the cancer. Best of luck and, and I agree about that bumpy road "fasten your seat belts." Your Dad will prevail!

Cheryl and Jack

Link to comment
Share on other sites

Katie

I had a feeling you would have everything under control, I am not at all surprised! I am happy to hear that everything is in place for Jesse, sounds like you got a great doctor and that is so wonderful to hear, they are hard to find. I am sure with Jesse's fighting spirit, your orchestration and the wonderful doctors everything will be alright.

Prayers coming your way

Bess B

Link to comment
Share on other sites

Katie-

It was soooo good to read your encouraging post!!! What an ispiration you guys are!! Thank God for Dr. "Harvard"! The plan sounds really good and I know it helps a lot to be proactive. Hugs to all of you and prayers are continuing.

Link to comment
Share on other sites

Dear Katie---so glad you have a plan now-and you feel better--glad you love your Dad's Dr---it makes all the difference in the world to have someone you trust

I am sure you Dad will get good results

eileen

Link to comment
Share on other sites

Great news that you have the ball rolling again..sometimes those who are fighting need a little break (and their bodies aren't afraid to let them know it). Dr. Harvard seems amazing...and it just goes to show you that we non-medical people can have a great deal of influence on the care of our loved ones by staying on top of the research and knowledge out there!

Good Luck to you as your plan goes into action!!!

Laura

Link to comment
Share on other sites

Katie -

SO GLAD to read your post - that you have a plan, and everthing seems to be rolling along! Dr. Harvard sounds indeed wonderful - it was heartening to read how positive he was. Continued prayers will be on tap for you and your Dad as he continues his fight!!!

Terrie

Link to comment
Share on other sites

Katie you are a girl after my own heart!! I would call you a "GO GIRL!" No sitting back for you and I admire that for sure!! A plan is good. sounds like this onc is a tremendous asset to your Dad's victory in this battle. I am so happy for you....many, many rainbow days to you...in my prayers...Sophia

Link to comment
Share on other sites

Guest PamaSue

Hi Katie,

I don't know if you have heard about this, but they now have a patch for pain. Unfortunatly this patch cost $54 each and it would be over $500 a month. Insurance may cover it but not sure. Evelyns insurance doesn't cover meds so she is applying for a special program for those who cannot afford it. Hopefully she will get this. It's really awsome. It put meds into your system as needed for pain and cutes back on the meds that one already is taking orally. I talked to someone who is on it and he says it's really great. Just lettting you know.

Love,

Pama

Link to comment
Share on other sites

This is encouraging, Katie, and I'm glad that you are there to help your Father through all of this.

I wanted to let you know that I can't take Oxycontin, because it contains Acetaminophen (same drug as in Tylenol). And the reason I can't take Acetaminophen is because it causes a bit of liver damage to everyone who takes it. The difference between someone who doesn't already have some hepatic dysfuction and me is that their liver is working well and repairing itself constantly, so it can take a little hit from the Acetaminophen. My liver function is compromised slightly because I have Polycystic Liver Disease. I don't have as much 'normal' liver tissue as the average person. (I'm guessing that the same could be said of someone who has liver mets?) My body doesn't recover from taking Acetamenophen, especially if the doses are chronic. There is another drug (same narcotic) that doesn't contain Acetamenophen. It's called Oxycodone. I don't end up with symptoms of liver and kidney failure when I take the Oxycodone. Vicodan was another drug that contained the Acetamenophen, and I couldn't take that one either. Maybe the liver mets have effected his hepatic function just enough to make it a problem when he is given anything liver toxic?

It's just a thought...

Fay A.

Link to comment
Share on other sites

:lol: Hi Katie,

I think what the radialogist told you is absolutely right. Be glad there

are options. That treatment will probably do the trick. I had two

brain mets, one removed surgically and the other with the gamma knife

yesterday. Start whole head radiation next Wednesday. My radialogist

gave me so much hope that I will be round for awhile thatI'm pursuing

this whole heartedly. I enjoy so much more now things that were

taken for granted. I pray for everyone and their families on this board

because everyone is so affected by this terrible disease. I hope your

dad is feeling better and your entire atmosphere will change and your

spirits will be uplifted.

God Bless,

Marsha

Link to comment
Share on other sites

:lol: Hi Katie,

I think you must beright about the size of the met to the brain. From

what I understand, if there are any microscopic cells left the whole

radiation will take care ofthat. They also told me if there were more

mets at another time, they could do the gamma knife again.

God Bless,

Marsha

Link to comment
Share on other sites

Katie,

You are doing an extraordinary job! I am so glad to hear about the new doc and that you have an RFA specialist right there. That is wonderful! Your dad and I will be doing the brain radiation together. I have been reading up on the side effects and do not think it is a worry. I think the doctors are used to seeing a lot of passive, uninformed patients and I can understand why. It's a lot of work to educate yourself on all of this, and especially hard for the patient to manage on their own. I wish I had someone like you looking out for me, but then I do, thanks to this board.

Jenny

Link to comment
Share on other sites

Join the conversation

You can post now and register later. If you have an account, sign in now to post with your account.

Guest
Reply to this topic...

×   Pasted as rich text.   Restore formatting

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.

×
×
  • Create New...

Important Information

By using this site, you agree to our Terms of Use.