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Treatment plan finalized!

donfoo's picture
donfoo
Posts: 1166
Joined: Dec 2012

This past Thursday my MO presented by case to the Tumor Board. I asked to attend and was really impressed that around 16 doctors (lost count) were all positioned around the long table and the projector was going through the key PET-CT scan. There was much discussion, questions asked, options reviewed, but at the end the group all agreed to the diagnosis and treatment plan that was presented. There was an awful lot of medical lingo thrown around so I surely did not catch it all but I did not feel there was any measurable objection or questioning of the dx and plan. 

On Friday, I had an appt with the MO and he felt good that the board agreed. He said he really wanted to get their agreement that the spots on my lungs showing on the PET-CT were not conclusive so that he could proceed with M0, meaning that they are going for curative treatment rather than palliative.

Given the board agreed spots are non-conslusive, i.e. not cancer for sure, then they sugggest I proceed with pulmonary consult for finding non-cancer source of spots such as valley fever, etc.

Meanwhile, the MO prepared a long list of orders to get the induction chemo series going. Looks like my induction treatment is a bit different the general ones posted here. Rather than 3 cycles at 3 week intervals , he is going to do 4 cycles x 3 week intervals but lower the dosage of the first series by 25% to see how my response is to the drugs. His approach is to try to get me through as much of the regime as possible rather than him me too hard and then have to scale back or out. As we know all these treatments create side effects, some really harsh.

The expectation is the induction reduces the tumor mass(es) allowing for an easier time under radiation. I LOVE that frickin idea since radiation clearly lays waste harshly to most. 

So, the anxiety and stress buiding to last week is now behind me and I know there is a clear path forward. Honestly, I did not really understand how close to the edge of no return I was until yesteray and still trying to digest the meaning of going foward with a curative treatment plan. 

dON

Skiffin16's picture
Skiffin16
Posts: 8058
Joined: Sep 2009

Always good to have a plan finally in place..., at least it makes you feel that you are accomplishing something.

The four week regime sounds like a good approach for you... I do know though my Dx was different, the cycles of chemo that I had did indeed shrink and actually cause my secondary tumor disappear.

Theprimary tonsils were taken out surgically, the seconary tumor dissolved away between the second and third cycle.

Of course I did also have seven concurrent weekly doses of carboplatin with the 35 daily rads...and more than likely at minimum, you'll still get the same rads.

But just think of that as killin off any stray cells in the targeted area.

Time to get the show on the road...

Thoughts and Prayers,

John

CivilMatt's picture
CivilMatt
Posts: 2866
Joined: May 2012

Don,

 

It all sounds good, 16 doctors in general agreement, curative treatment, lower dosages.  These items reflect well on your choice of treatment.

 

Now, relax (if you can), enjoy your time before  treatments, eat like there is no tomorrow and refer to the Superthread for must have items prior to treatments.

 

Things will really start to happen once the treatment plan is finalized (it is like they have a line waiting to get in, and they do).

 

Best of luck to you and hopes for a smooth journey,

 

Matt

phrannie51's picture
phrannie51
Posts: 3636
Joined: Mar 2012

onwards and upwards!!!  It is a relief to get to go home with the plan in a basket.  The chemo approach is just a tad different, but generally the same....and it sounds like they all see it the same way, and that is a godsend (I couldn't take it if they weren't in agreement, then looked up at me and asked what I thought...like I'd know what to do....and there are Dr.'s that do that).  The chemo may very well clear up the spots on your lungs, if it's not valley fever or another infection.

Did they give you a start date?

p

donfoo's picture
donfoo
Posts: 1166
Joined: Dec 2012

Hi P,

The port goes in this coming Tuesday (22 Jan). He could start immediately but wanted to get me on a Mon-Wed-Fri schedule. Monday (28 Jan) for the T and P chemicals, assorted anti-nausea and steroids, and placement of the 5-FU pack. Rather than do the 4 day pack, he wants to do 2 day infusion so I can come back and they can check vitals, hydration, side effects, and tune ups on any meds not given IV. Then put 2 days of 5-FU and have me come back Friday to remove it and do another check. I feel better knowing that he is being more cautious and very keen to closely monitor my progress and make adjustments more quickly.

After that 12 week TPF regime, then reasses CRT plan then do the standard 7x35 plus cisplatin/carbo. 

As to what the diagnosis the pulmonologist produces, who knows. Obviously, I hope he has some good candidates and does not say cancer. Just take a step at a time down that path. 

Thanks

Don

 

Pam M's picture
Pam M
Posts: 2194
Joined: Nov 2009

NOW you know how much better you feel when you have your plan sorted out.  Hope your pulmonary doc figures out the spots quickly.  Do well.

phrannie51's picture
phrannie51
Posts: 3636
Joined: Mar 2012

once they hook you up to the fanny pack of 5FU....I didn't have any problems with the Cisplatin....but holy moly, the 5FU made my mouth a holy terror.  After the first 4 day infusion, where my lips would bleed if I so much as talked, they lowered the dose for the next two.  And even tho it didn't keep my mouth from peeling and soring up, it did keep my lips from turning to hamburger.  It seems that lately, there have been way more people getting the "less Cisplatin, more often" in here....rather than the big big dose every 3 weeks.  Maybe the Dr.'s are seeing this as the better way for most patients??

p

Skiffin16's picture
Skiffin16
Posts: 8058
Joined: Sep 2009

Like you I also had the Cisplatin, Taxotere and 5FU induction..., as did several others. Then followed up with Carboplatin...

They put you out (or at least did me) when putting the port in, but taking it out more than likely will be a 15 minute in office procedure.

The port makes it nice, other than after, you have to go in to have it flushed every 6 - 8 weeks. Having mine in for nearly 2 1/2 years was a pain...easy to forget to go in for the flush.

I never had the problems like P with any reactions.... It was just kind of a pain figuring how to do things like showering. 

But it didn't limit me at all..., I was out fishing, hauling up big 10 - 15# grouper.

My labs would stick their boney heads to my chest when petting and playing, that could hurt as the skin is fairly thin there, and the port isn't really that deep.

Oh, and if you have cats, they tend to like the sweetness of the 5FU, so keep an eye out they don't chew the hose..., that was a warning they gave me.., though I have no cats.

 

Anyways, glad they are keeping a close eye on you, especially concerning your history with a few other medical problems...

EMEND will be your friend more than likely...

 

Best ~ John

fisrpotpe's picture
fisrpotpe
Posts: 1322
Joined: Aug 2010

all that is needed now is BANG! from the starting gun. 

what a race it will be, just like marathon's we all run them different, we all react differntly. 

the best thing is the crowd is cheering for us all together no matter who is running. 

Go Don Go!      Go Don Go!

john 

katenorwood
Posts: 1812
Joined: May 2012

Don,

I am so surprised and pleased you are so proactive with your cares.  I wouldn't even have thought of asking to attend the tumor boards meeting or known I could have.  Everyone is right we each have to journey through this a bit differently as far as treatments....but reading your post has given me the knowledge now and the courage to do it my own way.  I pray all goes great for you and that the lung specialist can give you good news.  Katie

Grandmax4's picture
Grandmax4
Posts: 579
Joined: Dec 2011

the best of luck with your plan of action~~~ time will now start to fly by as you prepare to go to battle

 

cureitall66's picture
cureitall66
Posts: 846
Joined: Aug 2012

I applaud you also for your proactive approach with sitting in with your tumor board. We had a tumor board meet as well, but were not offered to sit in with them. I think it would have been a great feeling just as you explained to hear the time and effort being thought out and discussed with your treatment. 

Don't forget that we are all here to help you along through your journey. No one is ever left alone on this journey. There are so many great people on this forum that offer great and encouraging advice that means more than they know. We just finished our tx about 7 wks ago and I really don't know what I would have done without any of these people. Their heart is really into helping others....I hope they had gotten the same help from others before them as well. Skiffin16 (John) was and has been my backbone throughout our journey. He reached out to me and offered his email address and has been right there for us. He has been our God-send! So, there are a lot of very kind-hearted people here that will be there when you need them, and put you back in place if needed. Trust me...I've needed to be "shaken up" a few times, because I was falling off track.

I wish you strength and faith through your treatment/journey and forward. 

God Bless,

~Cris

donfoo's picture
donfoo
Posts: 1166
Joined: Dec 2012

Thank you all for following along and your caring replies. I know I am new here and to some might come across rather brusk wiith the dogged pushing on getting the site working more smoothly but I feel deeply know how much this board is a vital lifeline to many here. And who more than us is ACS all about.

I build websites for a living so I looked at caringbridge and another then decided to build my own to record my war diary. It seems solid enough and generally coherent so others can follow along. You, my extended family, are invited to read along as you desire. You need to create an account first then I need to approve you to join then you will get an email once approved and you can then log in. It is a read only site thus avoiding any concern any visitor may have about having anything they post seen by others. The only posts ppl see are mine and I am still groping for how much to share and who to allow to view this stuff.  

I'd love you to jump on my tank as it heads onto the battlefield. There is a contact tab and I get private messages there or you can post here as I am going to be a fixture for some time.

 

http://beatdown.cognacom.com

 

Thanks again for your kindness and concerns,

Don

 

phrannie51's picture
phrannie51
Posts: 3636
Joined: Mar 2012

just waiting for approval.  Laughing

p

Joanielo's picture
Joanielo
Posts: 44
Joined: Oct 2012

I just signed up....Embarassed

 

ps.  Your sister is coming by today.....

fisrpotpe's picture
fisrpotpe
Posts: 1322
Joined: Aug 2010

so the waiting game is on, as i have appliedCool

 

john 

fishmanpa's picture
fishmanpa
Posts: 1106
Joined: Jan 2013

Hi Don,

Definitely sounds like a plan and I applaud you for taking the bull by the horns concerning your treatment. I'm taking a similar approach. In a situation such as this where we have a loss of control, it's good to at least be in on the planning and decision making. 

Feeling confident on your team leads to PMA which leads to victory. Sounds like they have your best interests and are striving for quality of life. Go get 'em! 

"T"

TheOtherDitto
Posts: 57
Joined: Apr 2012

I signed up for your blog...waiting on your approval!

Diane

Ingrid K's picture
Ingrid K
Posts: 811
Joined: Mar 2011

Don,

so proactive of you to jump right on the train !  Based on some of your other posts, I would have expected nothing less.

Now you have your plan of attack and can prepare for the battle.  If you've checked out the SuperThread, read some older posts of other survivors, you will know what to expect and when.

I have a good feeling that you will do just great.  As others have said, eat eat eat now...all your favorite stuff and then stay hydrated as best you can throughout the treatment.

Sending you best wishes as your start on the road to recovery !

Ingrid

 

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