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THC killing cancer ?? Or other alternatives ?

1 year 4 weeks ago #54343 by theadder
Hi Cynthia
We have a whole pain management team . No medicine helps my dad as I explained , due to the location and size of cancer , he has severe nerve pain and that's not treatable . Of course we communicate with doctors . He is one of the cancer cases where nothing helps .

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1 year 4 weeks ago - 1 year 4 weeks ago #54342 by Cynthia
Angelina, No one should have to go through what your father is going through. Please call or have someone who can be assertive call his health care team and tell them what you have told us here. Let them know that he deserve dignity and compfort and ask them to help you find solutions. Ask for a referral to a pain management specialist. I hope for all of you that there is some sort of solution to offer you and him some compfort.
Please keep us informed.

Cynthia Kinsella
T2 g3 CIS 8/04
Clinical Trial
Chemotherapy & Radiation 10/04-12/04
Chemotherapy 3/05-5/05
BCG 9/05-1-06
RC w/umbilical Indiana pouch 5/06
Left Nephrectomy 1/09
President American Bladder Cancer Society

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1 year 1 month ago #54278 by theadder
Jack,

Thank you so much for sharing all this helpful information.

Unfortunately, based on the location and size of tumor, nothing really helps my dad. The tumor is about 7cm by 6 cm now and it is sitting on the S1 nerves coming out of the spine, so it affects his left leg and genitals area+ tailbone. His bladder was removed in February, so this is still bladder cancer, that started growing in a lymph node in the pelvis.

The pain is so severe that sometimes he has to crawl on the floor to get to the bathroom and in the past two weeks he has been basically in bed without being able to get up and screaming 24/7,

He has tried very strong meds-such as morphine, which make him sedated but the pain is still there. Nobody has been able to control the pain in any way and it is sad. He had spinal steroid injections and a bunch of other things-all hardcore , and nothing takes the pain away. It is so devastating.
We are now enrolled in home hospice which to him has no real benefits, They just send a bunch of morphine to the house and that`s all they do.. The insurance doesn't even cover an aid.
It is a sad sad story, and I feel so helpless.

Angelina

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1 year 1 month ago #54264 by Jack R
Angelina,

Just a couple of additional thoughts on pain control - things that would be part of the discussion & consult with a Pain Management MD.

Make a list of what makes the pain worse and what provides any relief. Sanding, sitting, leg or body turned one way or the other, elevating one leg as starting UP then down stairs, body twisting right then left - you get the idea. Much of this is what a Physiatrist MD specializes in - this doctor is usually like a non-surgical orthopeadist.

What is a Physiatrist? Physical Medicine and Rehabilitation (PM&R) physicians, also known as physiatrists, treat a wide variety of medical conditions affecting the brain, spinal cord, nerves, bones, joints, ligaments, muscles, and tendons.(efinition from Dr. Google)

Also, I left off asking if you had tried a pain disruption unit - often called a TENS unit and by other names. Through EKG type pads placed on the skin, the little battery powered control box peovides a pulsed electrical current - a tickle - that is intended to interrupt the pain signal that is passing through the nerves. There are LOTS of different TENS units, and levels of programming. May or may not help, but a proven aid for many. I get mixed results. Unfortunately, everybody responds differently.

Bottom line - I hope I have given you some hope for PAIN control out side of the cancer treatment rhelp, but within the proven medical community.

ASK you cancer doc for a referral to a social worker or nurse navigator to find appropriate resources to get your dad out of pain and back to the better side of life. There is hope out there.

Best,
Jack

What's with this Bleeding ? 6/2015
DX: HG Papillary & CIS
3 Years and 30 BCG/BCG+Inf
T0 CIS comes back.
BC clear as of 5/17 !
RCC found in my one (only) kidney 10/17
Begin Chemo; Cisplatin and Gemzar
8/18 begin Chemo , round 3
Begin year 4 with cis T0

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1 year 1 month ago #54263 by Jack R
Angelina,

I am sorry for your father's situation, and I understand your desire to try anything. First please read the disclaimer I copied from a random website of a promoter of cannabis products. With NO proof of effectiveness, no research as to how much of their product is needed, they offer an unknown, untested treatment simply based on the claim that it is a natural product of a particular plant. The disclaimer keeps them "legal" because in it they state that their claims are all unproven.

My comments follow the disclaimer

Medical Disclaimer
The information on this site is not intended or implied to be a substitute for professional medical advice, diagnosis or treatment. All content, including text, graphics, images and information, contained on or available through this website is for general information purposes only. This website makes no representation and assumes no responsibility for the accuracy of information contained on or available through this website, and such information is subject to change without notice. You are encouraged to confirm any information obtained from or through this web site with other sources, and review all information regarding any medical condition or treatment with your physician. NEVER DISREGARD PROFESSIONAL MEDICAL ADVICE OR DELAY SEEKING MEDICAL TREATMENT BECAUSE OF SOMETHING YOU HAVE READ ON OR ACCESSED THROUGH THIS WEB SITE. We make no guarantees as to the effectiveness, results or treatment using any products mentioned. These products are not intended to cure anything. Only FDA approved drugs, procedures and radiation can cure. Alternative health aids may help the body by encouraging it to heal itself.

Angelina, I suffer chronic pain following a life changing accident. Bladder cancer followed a few years later. Real doctors, not necessarily the cancer doctor although s/he will be involved, can deal with specific pain issues. I have unrelenting pain in one leg that is controlled, not cured, by my pain management specialist, a part of the practice of anesthesiology. Every 6 weeks to 6 months, when the burning pain returns, my doctor kills a part of the sensory nerve that is transmitting the pain signal - after a couple of weeks, there is pain relief, and the muscle control nerves are intact, the leg still works. Starting the process can take longer or be instant, nor every session get the full result, BUT I KNOW THAT THERE IS RELIEF AVAILABLE.

I too have many friends that want help and make recommendations. Some suggest juicing, swimming, prayer, soaking is special salts, cleansing programs, and of course cannabis. THC, the psychoactive part of cannabis has never been recommended, but, at least here, CBDs - the supposed body repair part of the plant, in oil form is recommended to be rubbed on, not ingested. the conflicting cannabis claims are proof of the lack of proof.

Please talk to dad's doctors about 1) obtaining pain control and 2) about how to get dad back to whatever he is missing because of the pain. It may not be easy or fast. It wasn't for me, but hope can REALLY help. Talk to the cancer doc, pain medicine doctors, rehabilitation physicians the local cancer society and any other honest and legitimate health providers in your area. If you can, consult with one of the nationally recognized cancer centers offering multi-discipline cancer care.

I assume you have tried over the counter topical pain medications containing ingredients such as Lidocaine, menthol and eucalyptus are common. The prescription Flector patch helped me some. If the cost is low, and there is some real chance of help, it is likely worth a try, bur repeated failure is to be avoided if possible.

Chronic pain wears a person down. It can take the joy of daily life away. Hope helps a lot, any amount of success brings real joy and a thirst for more. Real doctors with real compassion have been a real help to me. Some of the other ones just want to help, some just want your money.

Thank you for looking for ways to help your dad. I hope you find one or more that work for him. Always check with his doctor for advice about alternative medicine.

Best,
Jack

What's with this Bleeding ? 6/2015
DX: HG Papillary & CIS
3 Years and 30 BCG/BCG+Inf
T0 CIS comes back.
BC clear as of 5/17 !
RCC found in my one (only) kidney 10/17
Begin Chemo; Cisplatin and Gemzar
8/18 begin Chemo , round 3
Begin year 4 with cis T0

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1 year 1 month ago #54259 by sara.anne
Is your father under Hospice care? They can do so much do ease the pain and make this whole situation as tolerable as possible.

Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
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