New Caregiver and new to this board - any pain management or eating tips

Bennette said:

Update on my mom's status
Sorry all - I kinda disappeared for a couple weeks. I had asked the docs to give her fluid when she went in for a calcium treatment and instead they ended up putting her in the hospital for a week. Her calcium was through the roof and she was severly dehydrated and still losing weight.

Needless to say I was distracted and concerned. Since then, they increased her marinol to 3 times a day and gave her tons of fluid in the hospital and even helped me get her pain meds sorted out. A week after increasing the Marinol she was eating like a normal person and started her Votrient, 3 weeks ago yesterday. She has been doing well on it and with eating, still working on the getting her to drink more, the dietician wants us to shoot for 64oz a day and we are no where near that. But the last two weeks, her weight at the doctor was within a pound difference from her first follow up at the doctor! We are maintaining!!!!

Now for the not so good. After they handled the calcium levels I continued to report confusions and bad judgement, so they gave in and did an MRI on Monday, so Monday afternoon we found out she has multiple small tumors in her brain. They are recommending whole brain radiation treatment to rid or stop them so they can get her healthy enough to still try the IL2 treatment. We meet with the radiology doc on Thursday for a consult and I am working like crazy to put info together. They have her on steriods for brain swelling and she is feeling fine and eating fine, but it sounds like we are about to embark on an even more trying journey in the coming weeks!

Thanks to all of you who were helping with food/drink tips. I am still trying all those suggestions as I have heard this eating problem is liable to turn back on during various treatments and especially radiation treatments. So your tips are still warranted and I am trying things out on her while she is cooperative so I can see what she likes, etc, for use later.

Thanks!

Bennette

Good to hear from you, I
Good to hear from you, I have thought about you from time to time when I check out these boards. Hang in there...day by day and do whatever works for your mom and for you too.

jimwins said:

Diet
Hi Bennette,

I agree with BrisGal about the hydration.
It might be a good idea to discuss with your oncology team about diet.
I'm sure there must be a dietician/nutritionist available.
Since her kidneys are affected, I think this would be important also.

As far as fresh fruits and vegetables, nothing uncooked if her
white count is down. Ensure and Boost can be expensive.
Before I started treatment, my oncologist suggested I get Carnation
Instant Breakfast (it's cheaper) in case I had problems eating.
Fortunately, I had no problems eating during treatment - I ate like
a horse thanks to the high does prednisone.

During treatment and for about a week after, I avoided acidic stuff
as it irritated my mouth and tongue (so no orange juice, salad dressings,
tomato sauce, etc.). For the Ensure, Instant Breakfast, etc. see if you can get a
small container (or variety pack) of each different flavor to see what she likes. That way you won't waste money on a bunch of something she won't drink.

If her issue is appetite in general, you might be able provide something to stimulate
her appetite. Again, check with your medical team - they should be able to help.
I wouldn't worry too much about the sugar right now unless she's diabetic but
ask your team about that also. The research I've done on sugar and cancer has
been on both sides of the fence.

Cancer cells need sugar to grow but so do normal good cells . Also, during
PET and CT scans they give you someting sugary to drink so they can detect
metabolism/activity in the cancer cells. This might be why some people think
sugar is so bad when you are dealing with cancer. I am not a medical professional
- just a thankful cancer survivor .

I wish you guys the best.

Hugs and positive thoughts,

Jim
DX: DLBL 4/2011, Chemo completed 10/2011, currently in remission.

Chemo-nausea, vomiting, etc and a diabetic
I am new to this board and it is my first time seeking outside help. My hubby has been through radiation for paroditic sarcoma and is now beginning chemo for lung/sarcoma. He is diabetic and I am concerned about maintaining his sugar level. I am scared of not doing the right thing or of not doing what I should have. I feel that I am always fighting a battle on his behalf within the medical fields.

Bennette said:

Thanks and current status
Thanks all for your help and thoughts! After meeting with the radiologist, we found out that she has 20-30 very small tumors in her brain. After doing tons of research on whole brain radiation and talking to the rad doc and her onc, we decided to do nothing about the brain mets yet. Since they are very small we are going to monitor them and we are praying that the Votrient she is on will keep them from growing. She has her first follow up CT scans and MRI set for July 3 and we get the results on July 7. They are going to do MRI's every 6-8 weeks and then if the brain mets get big enough to really start effecting her abilities, then we are going to have to do the whole brain radiation. Part of the decision was also based on the side effects from the steriods they put her on, due to the swelling. So when we decided to wait on the radiation, they started decreasing the steriods. She was doing fine, until this week, it has been hard as we reached the 2mg every other day dose, the effects of coming off of them sent us back into the not eating/drinking stage, which we had overcome. Tuesday - Thursday were bad, but she was back to eating better again yesterday.

So we just keep hoping and praying that the Votrient is doing its job!!!

I appreciate all the thoughts and words of encouragement from everyone and I think about all that each of you are coping with also, wishing you all the best in your struggles too!

Bennette

J-Tube...
My dad has Esophageal Cancer Stage IV. He was DX in 8/2010. I have been on this website since last month. I know that these cancers aren't really related, but many people on the EC Discussion Board have recommended that when one cannot eat or drink, which is common with EC, a J-Tube be placed for proper nutrition and hydration. Maybe this could be an option for you. My dad has not been as far down the road to need one, yet, but if he has been very close. I didn't know ANYTHING about them and, in fact, I was against them completely! Then after doing much research and getting LOTS of sound dvice from others who had "been there, done that" I talked to my dad and we decided that if it ever gets there, that this is an alternative to help him.

I'm so sorry to hear about all the small tumors in her brain. Sounds like you are doing the best you can. I know it's tough to care for someone you love. Especially when they make poor decisions and just aren't themselves. I hope that you look into a healthier option than Ensure or Carnation. Both are loaded with processed sugars. Even milk is not the best option for getting stuff down. Try Unsweetened Almond Milk. And if you must get a meal supplement, try Glucerna. It has a significantly less amount of sugar in it. Have you tried juicing? It is the best way to get a hundred servings of veggies and fruit into a single glass. Diet is so important in maintaining weight and building strength in the immune system. I know you are aware of this. I've read all your posts on this thread.

Anyway, I hope this may help you. J-Tube may be an option. Research it and don't let the docs scare you or tell you no. Come to the EC Discussion Board... Check out the threads on J-Tube... A lot of HELPFUL info... William is a great help there, too.

Best of luck to you and your mom!!

~Jayme

Bennette said:

End of the journey
Thanks to all of you for your help. I had to take my mom to the ER last Thursday, they found out she has a tear in her bowel system, making her septic now. It is not healing itself and they don't think she can survive a major surgery. Per her wishes we have a DNR in place and are making arrangements to get her into the best inpatient hospice we can find. We think it will be another day or two before they can move her. Yesterday they took her off all monitoring and are just giving her antiobiotics, fluids, and pain meds until she leaves the hospital.

This is not how we expected it end, but she seems almost relieved. It has been a short but difficult battle, but we are going to do our best to make the most of the time left!

Thanks for all the support and advice you all have given to us and I wish you all the best in your journeys, may they be longer and much more successful than ours!

Yours truly,

Bennette

You're in my thoughts
Hi Bennette and thanks for the update.
I'm sorry to hear things have gone in this direction.
You are in my thoughts.

Hugs,

Jim