my husband had round 9 and last of cabitaxel two weeks ago
He cannot hardly stay awake for more than a few minutes and can go nowhere and can’t even think straight
We are flying from Scotland to London for scans next Monday for pre Lutetium treatment
Not sure he will be up to it
Say thing I can do to help him
Especially on the dietary front
Thanks
🙏
I suggest you should contact his doctor's office to get a letter of explanation of his condition and care BEFORE you go flying. Take it to the airline several days before. Plan on wheelchair transport (he'll likely resist, tell him it is easier for you), and be ready to explain and ask for any special care he needs. If someone (airline staff) decides he needs care, you don't want to be emptyhanded when dealing with whatever medics you have to deal with on the spot.
If he sleeps the whole time, he might not be breathing deep enough to get adequate oxygen, most planes are only pressurized to 5000ft, so it is thin. Ask about the potential need for supplemental O2.
Thank you for your help. We are going assisted so the wheelchair has been sorted. The O2 issue is something I had not considered.
Regards
Did they do a CBC test ? If he has a CBC consult if the results are OK to do treatment with Lu 177 PSMA. He had 9 rounds of taxane chemo and his bone marrow may be affected.
not sure what a cbc test is
We have scans next week I assume that will be covered by them
Thanks for replying
Complete blood cell count. If he has very low hemoglobin, platelets, and/or white blood cells, he may not qualify for Lu 177 PSMA therapy.
If they do the test in your community consult if his blood cells parameters are OK for this treatment before flying to London.
last bloods were ok so would hope the treatment will suit
Maybe it will give some extra hope to tell him my story. I know I'm only one person, but his situation sounds exactly how mine was before my first LU-177 treatment. I didn't even have the energy to change clothes and stayed in my pajamas for days at a time, just moving from my bed to the couch and occasionally the bathroom. My appetite was gone, losing weight, nausea all the time and full time hydrocodone for pain.
My wife had to wheel me into the treatment room to get my first infusion. Slowly, each day has gotten a little better for me, it's really been like a miracle so far. Of course, I don't know how long it will last, but it's been an incredible turn around. Today is the first day that I've had only one pain med for the entire day and it was s small dose. My appetite has returned, I have quite a bit more energy, sleeping less.
Tell him to just hang on a little longer, the lutetium could really turn things around like it has for me.
what a great story
Thank you for sharing this
This is what we hope for
I hope you continue to improve and wish you all the best
Just to add to the positive comments from EdBacon, I too suffered badly with chemo (mine was Docetaxel) but have found Lutetium a breeze. Now had 3 infusions and PSA has gone from 836 to 40. Extensive bone mets down by 50%. Only side effect from Lutetium has been very mild tiredness for a couple of days. Right now - feel terrific. All the best.
wow that is brilliant
thank you
keep going - wonderful
I had chemo too right before LU-177 and though it wasn't working well, it was doing something. For me, I felt worse and worse after the chemo infusion. The side effects were there, but the terrible feeling, pain and loss of appetite and low energy weren't from the chemo, they were from the cancer. The chemo would hold them off for a little while, then they'd be back before the next infusion.
yes I wondered if it was the cancer
Bit scary but should have treatment by mid March
Wish it was sooner
I struggled through the long wait and just tried to manage everything until the day arrived. But if it works, relief comes fairly quickly, that's the positive side to this. Definitely a more effective treatment than chemo and with 1/10 of the side effects.
Hi thinking of you
It is rough as you go forward, it takes me a week to get back to some normal diet. The 3rd through the 7th days are challenging, my favorite is mashed potatoes with gravy, fat has no taste, used spices to improve taste . Meat is an issue, with taste buds not functioning properly you cannot taste what it is but you know what it is. You have to eat or you are in trouble, if you have nausea meds use them especially at night when your stomach is empty. The body aches last a couple of days and Tylenol worked for me. You have to do some experiment with different food and keep a log, it affects the digestive track.
thank you
Soup seems to be a good option
Home made and full of good ingredients
Just have to keep trying
I have made that and love soup, store in freezer and it gives you liquid other than water.
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