First appt with medical oncologist today

I am sure I will have many questions today for all of you out there. My first appt with oncologist this afternoon. Hoping for some good news (like I have some time) and that this is a cancer that I can fight. Prayers needed.

[Tjc1]

Good luck and take notes!

[gusgold]

Now that Nalakrats has prayed for you be very careful going near the water as a side effect is being killed by a Gator. See pic of last guy Nal prayed for.

Gus

newsghana.com.gh/wp-content...

[softwaremom00]

I started a cancer-care/healing binder for my husbands care back when he was diagnosed. I keep all the paper copies of lab reports. I also have a notebook that I keep in the binder. I have found this to be very useful. I have the copies of the papers that they give you that have information on the drugs..etc.

I always have a list of questions. Today I will print out some research articles on drugs for our appointment tomorrow. This will go in the cancer binder tonight.

At our cancer center they gave us a free bag.. this is where I keep the cancer binder. It hangs on a hook and we have taken this to all of our various appointments.

Good Luck with your appointment. Remember that the Doctors do not have a crystal ball. There is always reason for hope!

I am praying for you. Sending tons of hugs too!

Softwaremom

[todokomo3 in reply to softwaremom00]

Softwaremom00, can you forward me your questions too? Tomorrow is my husband's first visit to Sloan. He was just diagnosed.

[Hidden in reply to todokomo3]

Basically I wanted to know what the Tx recommendations are for prostate cancer outside the prostrate (metastic) Meds? Chemo? To date the dr believes first line of treatment are oral meds. No chemo yet. Later down the line that may need to be considered. Does this help you?

[softwaremom00 in reply to todokomo3]

The was my starting point for my question list.. here are some suggestions

cancer.org/content/dam/canc...

cancer.net/navigating-cance...

chrisbeatcancer.com/20quest... - I skipped all of the ones that I thought might be insulting to my doctor. Still there are a lot of good ones on the list.

Make sure you get a phone number you can call where you talk to a doctor who can call in a prescription.. this is very important! .. sometimes my husband would get sooo sick on the weekend and the nursing phone numbers they had us call were not helpful.. we needed a prescription.. we needed to to talk to a Doctor or someone who could call in a prescription.

I would ask to sign up for medical marijuana.. if your state allows it. Even if you do not plan on using it.. getting the card does not hurt. It takes over a month.. A lot of folks with bad pain use it for pain relief... The oils or tinctures. With the card most places that sell cbd oil will give you a discount if you have an Medical Marijuana Card.

Ask for a consult with an integrative doctor. This is someone who can advice you on nutrition. It took us over 8 months to get in to see an integrative doctor. I imagine most places are not much better. Our insurance covered this.. maybe yours does too.

I made a list of all of my husbands symptoms and asked our oncologist about them and what we could do to improve them.

If possible review his lab results before you talk to the doctor. Our health system has online access to lab results. I would try to address every number that was not in the normal range and ask the Oncologist about it. How could we improve it, and what caused it to be abnormal.

I wish I had recorded our Oncologist on our first visit... he talked so fast and had so much information that I could not write it down fast enough. You can download an app for your phone to record the conversation. Just a suggestion. You might want to ask him/her first.

Definitely try to get an oncologist that is specialized in prostate cancer or Urologic oncology.

I hope this helps a little. So far I have really liked the oncologists that we have gotten at UNM. I bet you will like yours too.

Let us/me know how it goes. Lots of prayers!

Softwaremom.

[todokomo3 in reply to softwaremom00]

Thank you so much softwaremom!!

[Hidden in reply to softwaremom00]

Awesome suggestions! Thank you. I did not think to get a phone number for Rx / pain or anything that arises regarding his prostate cancer. Now I wish I recorded the session although I took a lot of notes! Thank you for All of your suggestions. Much appreciated!!

[hysir in reply to Hidden]

Ask your doctor if you can record the meeting on cell phone. You miss a lot of info while writing notes. My MO suggested we record meeting.

[Tall_Allen]

Which MO are you seeing? You were asking for recommendations last time.

[Hidden in reply to Tall_Allen]

Today dr drake at Columbia

Next week dr oh at mt Sinai

And hopefully dr morris very soon. Sloan had to do a transfer of care.

[podsart in reply to Hidden]

What does Sloan mean by “do a transfer of care”?

So, you can pick your dr at Sloan rather than get assigned one?

Great combo of docs to compare, will be interesting and important how they differ-pls let us know

Much luck!

[Hidden in reply to podsart]

Yes. Someone On this blog suggested Dr Michael Morris. We did not agree with the initial treatment recommendation from a particular doctor at Sloan so I went to a “patient care representative” and asked for a “transfer of care” it’s a process, about a week, but I was honest with her and we did it

[Tall_Allen]

Let us know how they differ in their recommendations.

[tallguy2]

I too am starting Taxotere, on May 14th. I will keep you in my thoughts and prayers. Interestingly a recent clinical trial suggests it’s a tossup between ADT and Chemo vs ADT and abiratorone (Zytiga). My urologist would go either way and stated that we will likely go with abiraterone down the road as step two. The good news, cloc, is that there are more tools in the toolkit. Good luck!

[Litlerny in reply to tallguy2]

That’s what my MO at the Mayo suggested for me. We figured it would be best to do the chemo now while I am still (relatively) younger and (generally) stronger and healthier because the side effects from the chemo are usually a bit worse than with Zytiga (that’s the bad news), but once you finish the course of chemo, you are done. With Zytiga + prednisone, you are on it long term. I just finished 6 cycles on 3 week intervals in mid-March. So far so good. Still have some mild residual side effects from the chemo, but not bad. Best wishes to you when you start your chemo.

[tallguy2 in reply to Litlerny]

Thanks very much, Litlerny. What's your best guess about my ability to go on vacation (involving airplanes) after cycles 2 and 5 of Taxotere?

[Litlerny in reply to tallguy2]

Your experience with the chemo may be totally different than mine, so this really will be a best guess. From what I have read and heard, some guys don’t get much in the way of side effects. Others are miserable. So, with that caveat, here is my experience. 😎

After cycle 2 you should have no problems. I’d recommend, just as a precaution, getting an aisle seat and wearing (or taking) Depends on the off chance you might get some diarrhea at 30,000 feet. Also, I would carry both anti-diarrheal (like Imodium) and a stool softener/laxative (like dual action Senekot S), in case you get constipated.

After cycle 5 (again, based solely on my own experience) you are likely to have worse and longer lasting side effects because the side effects of the chemo are, in part, cumulative. For me, #5 and #6 were much worse than the first 4, but the progression of the side effects was fairly predictable, and mostly treatable with over the counter drugs. Just be prepared to feel pretty crappy from days 4 through 11 following each cycle of chemo.

Immediately prior to each infusion I got drugs to help prevent nausea, and they prescribed oral dexamethasone to take on the 2nd day following each infusion. I usually felt a little fatigued, but okay for about 3 days after each treatment. After that I went downhill for a week or so. That is when your immune system crashes. Felt like having a mild case of flu...tired, achy, weak, and alternating constipation and diarrhea. After that you gradually start to feel better again until it’s time for your next infusion.

My biggest fear regarding flying after chemo is that your immune system will be down, and you will be in a position to pick up a bacterial or viral infection that will be hard to fight off. You will be in cramped quarters with people coughing and sneezing and touching seats, tray tables, etc. if that’s a worry, take some disposable masks, and anti-bacterial wipes and spray or gel. Also, if you are prone to nausea or motion sickness, meclizine or ondansetron can help.

Hope that helps. Re-reading the above p, it sounds a lot scarier than what you will likely experience. With some precautions and planning, you can make and enjoy the trips. ✈️

[tallguy2 in reply to Litlerny]

Thanks very much for your insights. Best wishes to you!

[Litlerny]

Prayers and best wishes to you cloc. This is definitely a cancer you can fight. Keep us posted on your oncology visit.

[jimhagood]

I hope your appointment yesterday went well. Please keep us posted.

[Hidden]

To cloc, welcome! What did the doctor say?