Diagnosis & Treatment Plan

A few people have texted me asking for an update about yesterday’s appointment, so I apologize for not being prompt with this update.  By the time I got home from work after both appointments yesterday, I was exhausted.  Donny and I ate dinner and were sleeping by 8:30pm last night.  We got a good night’s rest to say the least.

Yesterday began bright and early with our first appointment at 10am, which meant that we had to leave before 9am to account for traffic.  But once again, even with bumper to bumper traffic and a stop at Dunkin’ Donuts for breakfast and coffee, it only took us 35 minutes to get to Northwestern.

We met with a fertility doctor first.  She was so sweet and lively, not at all what I expected.  We talked with her for a long time about our options, the process and life in general.  She was from Wheaton, so she and I were trying to convince Donny that Elmhurst is better than Norridge.  (Even though it doesn’t matter at all...I just want to live in Elmhurst, and Donny isn’t sold on it yet.  All in good time...hopefully.)  Anyway, she walked us through the process and what it would entail when the time comes to have kids.  So I think we both left that meeting feeling very comfortable that our future will include children no matter what.

We had a two hour lag between the fertility appointment and our next appointment with Dr. P., so Donny and I killed some time eating lunch, walking around and reading/playing games on my phone.  It was actually a great and somewhat laid back morning.  It was even a little fun.  There were quite a few characters in the one waiting room.  There was a guy who was snoring so loud, it sounded like he was performing in a concert by himself.  Everyone in the waiting room was cracking up. 

Donny’s parents got to Northwestern an hour before the appointment, so that broke up our waiting time too.  We met them and all went up to the 21^st floor together.  Time then went by pretty quickly.  They called us into a waiting room in the back and Dr. P. met us there. 

But my anxiety started the second his parents got there because I felt bad.  We hadn’t told them about the bone marrow biopsy.  I got a call the day before saying that Donny would need a bone marrow biopsy done again.  The lady who called to tell me this didn’t have a reason as to why.  So I told Donny but we decided not to tell anyone else because we knew his parents would be so anxious and upset.  So I felt really bad, but we figured it was better not to worry them ahead of time. 

It was a good thing we didn’t tell his parents, because the bone marrow biopsy didn’t even happen!  PHEW!  Dr. P. wasn’t aware that we had a biopsy done already, so he said he didn’t need to duplicate efforts.  Although, this irked me a bit because I had called the day before and spoke to one of the nurses who said they received the biopsy from the other hospital.  So I knew that the results were there.  This was also extremely disappointing because without the bone marrow biopsy, Dr. P. couldn’t give us the final diagnosis.  The thing we’ve all been anxiously waiting for all week.  Regardless, Dr. P. was able to pretty much give us a diagnosis anyway.

Diagnosis

The PET Scan showed that the cancer was in Donny’s spleen.  DON’T WORRY!  This is normal.  The spleen is typically the first place the cancer will go to if it moves from the lymph nodes.  But this does mean that the cancer is stage 3, which is just as curable as stage 1 and 2, so again...don’t worry (or try not to worry more).

Treatment

From here, Dr. P. was amazing.  As nerve racking and unsettling as this whole process is, Dr. P. was so knowledgeable and thorough about everything that we were all very comfortable with what he had to say.  He went through two different options for treatment: one for a lower stage cancer that includes radiation and one for an advanced stage cancer that doesn’t include radiation.  And there are two great clinical trials that Donny can enter for either option.  Either clinical trial would be a great opportunity because they are confirming previous data from other trails.  Meaning, these trials are in second phases, so Donny isn’t a guinea pig here.  There were years of studies done to determine initial success rates for these types of treatment and now Donny gets to benefit from that to help further prove those results.

Dr. P. said that he most likely will treat Donny for the advanced stage cancer because it is in his spleen.  He also said he wants to avoid radiation if we can.  Dr. P. explained is as such, “This is by no means a medical definition, but think of radiation as a slow chemical burning of your skin.  Over your lifetime, this opens you up to heart disease and other cancers.”  He said if Donny were 60 or older, radiation would be a no brainer, but because he’s so young, radiation could end up being harmful later in life.  Not that chemo doesn’t open you up to other diseases later in life, but I think chemo is the lesser of two evils, or two live saving evils.

Basically Donny’s treatment would be two cycles of chemo, or 4 rounds of chemo.  One cycle (approximately one month’s time) includes two rounds of chemo; one round every two weeks.  So Donny will most likely go through 6 months of chemo which equates to 12 rounds of chemo – 2 rounds every month.  That’s a lot of numbers...I hope you got that.  Sorry!

After two months (4 cycles) of chemo, Dr. P. will have Donny redo the PET Scan to see if the cancer has shrunk.  If it has, Donny will continue chemo on the ABVD therapy.  If the cancer has not shrunk, Donny will be put on an escalated chemo that is stronger and administered every 3 weeks instead of every 2 weeks.  This process is all part of the clinical trial.  At least 5 years’ worth of data has shown a HUGE success rate in patients who are restaged and whose treatment plans are adjusted according to what the PET Scan shows.  In fact, Dr. P. said the data is so compelling that even if Donny doesn’t choose to be in a clinical trial, he will treat Donny this way.  So naturally, Donny, his parents and I were all asking where we sign.  New studies are showing huge success rates?  We’re in!

Dr. P. also said that without radiation, there is a slightly greater chance the cancer will come back.  But he said very matter-of-factly, yet somehow jokingly because he had this crooked smile on his face, “If the cancer does come back, then you’ve bought yourself radiation.”  The success rates of curing a reoccurring cancer are almost as good as the chances of curing the original Hodgkin’s, so we all felt very comfortable with Dr. P.’s assessment and treatment plan.

 

Of course we had lots of questions for Dr. P. that he answered completely and with humor actually. We were all concerned about Donny teaching in a high school with lots of germs during chemo because he will be immune suppressed.  We also were wondering about family parties and the holidays because both our families have little kids.  Dr. P. chuckled a bit and said, “You’re going to be immune suppressed whether you’re sitting at home or going about your normal day.  So just be smart about it.  Don’t go around people who you know are sick and don’t let anyone cough in your face, and you should be good.”  He said he has a young guy who has been hospitalized twice already for bacterial infections, but that he also has 70 year olds who plow through with no problems.  So it really depends on the person.  Naturally, we were all thrilled to hear this!  Donny’s wonderful family was already planning on how they could bring Thanksgiving to him if he couldn’t make it to his cousin’s house, so I know they’ll all be excited to hear this too!

The final thing that has to be done now is that Dr. P. needs to go back and look at Donny’s bone marrow biopsy to be sure that it isn’t stage 4, which again, is very unlikely.  Then, today, Friday, November 2^nd, Dr. P. will meet with his colleagues and have them review Donny’s condition to be sure that the plan Dr. P. has laid out is in fact the best route to take.  I couldn’t believe that this is part of the process...there are a ton of doctors that deal with Lymphoma at Northwestern and they all look at the diagnosis to confirm it?!  It’s like we’re getting 20 second opinions all in one!!  I keep thanking my lucky stars that we live in Chicago and have this amazing health care available to us.  It’s truly amazing.

Now we wait...again...for Dr. P. to call Donny to let him know when his first round of chemo will be.  He said he needs to check the schedule, but that Donny will most likely be able to start late next week.

 
Until then, we are excited about Donny’s playoff football game on Saturday!!  Thank goodness he has football to keep his mind off everything, although, as I keep saying, Donny really is doing great.  He has such a great positive mental attitude and is ready to beat this!