Where to go and what to do!

barb0305
barb0305 Member Posts: 10
in Caregivers #1
Good day everyone!
For the past several months my boyfriend has been sick and lost nearly 40lbs. After numerous ER and Doctor's visits he was finally admitted into the hospital where he stayed for 2 1/2 weeks. The doctors advised us his blood shows signs of cancer (His red blood cells are low and white are normal)and he underwent many test while in the hospital including: CT/MRI scans, biopsies, bone marrow, etc. Long and short is all the test came back normal. They released him on Friday with a "Cancer of unknown origin". We go on Wednesday for a PET scan and will go from there.

So is all this normal? What can we expect from the PET scan? Are there things to look for when picking out a doctor? hospital?

Thanks in advance for your insight....
Melissa

Comments

  • Barbara53
    Barbara53 Member Posts: 652
    #2
    the cancer lights up
    So sorry you're here, and having to go through all this. Cancer can be a slippery thing to diagnose, so try to be patient. The prep for the PT deprives the body of sugars, which cancer cells need to divide. They're hungry, so when a radioactive dye laced with glucose is introduced, cancer growths larger than a pencil head light up. Some uptake of some dye is normal in some organs, but the docs will look for unusual bright spots or other known cancer patterns. It won't tell the whole story, but will tell them where to look next.

    Compared to some other tests, the PT is easy. No swallowing quarts of chalk first, and it's over in a couple of hours.

    Good luck with everything. You've come to a good place.
  • Tina Blondek
    Tina Blondek Member Posts: 1,500 Member
    #3
    Barbara53 said:

    the cancer lights up
    So sorry you're here, and having to go through all this. Cancer can be a slippery thing to diagnose, so try to be patient. The prep for the PT deprives the body of sugars, which cancer cells need to divide. They're hungry, so when a radioactive dye laced with glucose is introduced, cancer growths larger than a pencil head light up. Some uptake of some dye is normal in some organs, but the docs will look for unusual bright spots or other known cancer patterns. It won't tell the whole story, but will tell them where to look next.

    Compared to some other tests, the PT is easy. No swallowing quarts of chalk first, and it's over in a couple of hours.

    Good luck with everything. You've come to a good place.

    Welcome
    Hello Melissa and welcome to you and your boyfriend to the caregivers site. Yes, as Barbara said, the PET scan will show up as the cancer lighting up. This is not such a hard scan, but what bothered my dad was having to lay completely still with his arms over his head for a good 45 to 60 mins. This is one of the best scans to dx the cancer. Yes, be patient. It does take some time to get all of the answers, and then....they change the questions! Hang in there. We are always here for you. Lean on us. Most of us have been through this. Hugs to you both, and know we will be praying for you.
    Tina in Va
  • barb0305
    barb0305 Member Posts: 10
    #4
    Tina Blondek said:

    Welcome
    Hello Melissa and welcome to you and your boyfriend to the caregivers site. Yes, as Barbara said, the PET scan will show up as the cancer lighting up. This is not such a hard scan, but what bothered my dad was having to lay completely still with his arms over his head for a good 45 to 60 mins. This is one of the best scans to dx the cancer. Yes, be patient. It does take some time to get all of the answers, and then....they change the questions! Hang in there. We are always here for you. Lean on us. Most of us have been through this. Hugs to you both, and know we will be praying for you.
    Tina in Va

    thanks!
    Thanks for the quick responses! It does seem like an ever changing game. So how do you go about picking the best doctor? We have been referred to a local dr and figured we would let them run the PET scan and decide what action to take after we get the results. It is hard to plan for what's next if you are unsure about today lol.

    What is the best diet to follow to help him put some weight back on. He has never been a big eater. He is 6'2", normally weighs between 160-165lbs. He was skin and bones then but now at 128lbs, well you can imagine what he looks like. In prep for the pet scan, we were advised to do a high protein diet and stay away from carbs and sugars, which we have been doing.

    Should I be worried about this right now? URGH!!!
  • DrMary
    DrMary Member Posts: 531 Member
    #5
    barb0305 said:

    thanks!
    Thanks for the quick responses! It does seem like an ever changing game. So how do you go about picking the best doctor? We have been referred to a local dr and figured we would let them run the PET scan and decide what action to take after we get the results. It is hard to plan for what's next if you are unsure about today lol.

    What is the best diet to follow to help him put some weight back on. He has never been a big eater. He is 6'2", normally weighs between 160-165lbs. He was skin and bones then but now at 128lbs, well you can imagine what he looks like. In prep for the pet scan, we were advised to do a high protein diet and stay away from carbs and sugars, which we have been doing.

    Should I be worried about this right now? URGH!!!

    Only for the day before
    For the PET/CT scan, you do the low carb diet so the cancer cells will be starved and so suck up more of the radioactive glucose solution and show up better on the scan.

    However, he needs lots of calories to gain weight, and you don't need to worry about avoiding carbs except for the night before the scan (unless your doctor says differently).

    Fats are the easiest way to get calories in, if he can tolerate them. Cream/butter/whole milk yogert/cheese in and on everything. If he has never been a big eater, you might try getting more liquid calories in him. We had to do liquids because Doug's treatments made his throat very sore - I highly recommend CarboGain (you can buy it online or from places like the Vitamin Shoppe) for carbohydrates and Blue Bonnet's Whey Protein Isolate (natural flavor) for the proteins. I used to make very high calorie shakes with those two plus milk and cream and some flavored syrup. It goes down easy and you can follow it up with other food 30 minutes later without feeling too full.

    Light exercise (like walks) helps the appetite and can stimulate muscle growth.

    Let us know how the scans come out.
  • Tina Blondek
    Tina Blondek Member Posts: 1,500 Member
    #6
    barb0305 said:

    thanks!
    Thanks for the quick responses! It does seem like an ever changing game. So how do you go about picking the best doctor? We have been referred to a local dr and figured we would let them run the PET scan and decide what action to take after we get the results. It is hard to plan for what's next if you are unsure about today lol.

    What is the best diet to follow to help him put some weight back on. He has never been a big eater. He is 6'2", normally weighs between 160-165lbs. He was skin and bones then but now at 128lbs, well you can imagine what he looks like. In prep for the pet scan, we were advised to do a high protein diet and stay away from carbs and sugars, which we have been doing.

    Should I be worried about this right now? URGH!!!

    Hello Barb
    You are most
    Hello Barb
    You are most welcome! That is what we are here for. I am thinking...first things first. Let's get him correctly diagnosed, then concern yourself with his diet needs. Sometimes what happens is the patient needs to have a feeding tube put in. There are two different kinds. From what I have learned, the j tube is the best. The feeding tube will provide all of the nutrition necessary. This is a bridge that you will have to cross in his near future. The high protein diet is a good recommendation. You can do this in a shake. I know this is all so overwhelming. Try to take it one thing at a time. Dx first, then go from there. Hang in there my dear friend, this is a long bumpy road, but we are all here to help you!
    Thinking and praying for you!
    Tina in Va
  • barb0305
    barb0305 Member Posts: 10
    #7
    Tina Blondek said:

    Hello Barb
    You are most
    Hello Barb
    You are most welcome! That is what we are here for. I am thinking...first things first. Let's get him correctly diagnosed, then concern yourself with his diet needs. Sometimes what happens is the patient needs to have a feeding tube put in. There are two different kinds. From what I have learned, the j tube is the best. The feeding tube will provide all of the nutrition necessary. This is a bridge that you will have to cross in his near future. The high protein diet is a good recommendation. You can do this in a shake. I know this is all so overwhelming. Try to take it one thing at a time. Dx first, then go from there. Hang in there my dear friend, this is a long bumpy road, but we are all here to help you!
    Thinking and praying for you!
    Tina in Va

    Long bumpy road lol what an understatement
    Thanks for sharing all the information, it is wonderful to have an outlet for questions.
    Since being released on Friday from the hospital, Tom has been doing decent. No fevers, night sweats, and has been eating a little and keeping it down, until last night and today. Is this normal? When we left the hospital, all we were told is the doctor will arrange a time for the scan and follow up with them.
    He was sent home with pain pills, nerve pills, and a nausea pill (which has not been filled yet because they are waiting on insurance to approve it). They gave us no idea what to expect and how to handle or deal with it. For the fever I am giving tylenol, guess that's ok. Not much I can do for the nausea except to try and let him eat a couple crackers.

    Will he continue to go thru this or is this something that will pass? I really dont know what I should look for if he is getting worse and should go back to the hospital.

    Guess I have learned to ask more questions!

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