Seeking Pain Relief Advice During Immunotherapy

Sidney I have the ALK mutation and take Alectinib orally for 6 years so far. Side effects have mostly been GI constipation and diarrhea. I also have sensitivity to the sun.

No idea of my ALK. I’ll ask my oncologist about Alectinib. Thank you Joe.

Hey Sidney, do you have any updates for us? I hope your treatment is going well. Stay strong!

Thank you for asking. Avastin 6th infusion was the 9th. MRI is the 6th of July. Hoping for at least remission w/o progression. It is hard and I can’t say I’ve been thru anything harder but I try to keep smiling.

We will smile with you. We understand your journey and wish you strength to make it through! I'm smiling right now. Take good care.

Thank you Garey. I try😊

So sorry

Hi Sydney, Im going on year two of non small cell lung cancer with esophageal lymphnode cancer. Chemo and radiation shrunk my tumors the first year, but now it is coming back. I'm on a trial drug and the side effects are horrific. Back and chest pain, diarrhea and stomach pain, body aches and joint pain all seem to get me at one time of day or another. I've been prescribed oxy but I don't like taking it a lot. Maybe two or three nights a week to help me sleep. What I find that takes off a lot of the edge of is THC drops. 1/4 dropper every three to 4 hours works for me. Start slow and small to chech your tolerances.

Steve Olish They’ve located another metastatic in my spine this time. I will know what treatments are up for me in a couple weeks. NSCLC is progressing by the book. THC does help some.

PS: I will start Pain and Palliative this month also. We’ll see what they offer.

Dear Sidney and Steve, my heart goes out to both of you and your families. This is your journeys and you can take as much control as you so desire. I wish you strength, peace and dignity as you travel this difficult path. Try to stay as positive as you can along the way. Love to you and your loved ones!

My thoughts and prayers are with you. I've heard about a drug called Ivermectin from my cousin. It helped her husband become cancer free for 15 years until he died from another type of heart disease. Ivermectin was developed as a de-wormer for animals and the was later approved for humans. It was taken off the market when they found out that it cured covid. After some major litigation it is back on the market. It has now been proven to cure certain types of cancer. It's readily available in Tennessee. I am trying it now. At this point in my life I have nothing to loose. I have done enough research to see that it has a chance of working. Most of the bad reviews of this drug are written by doctors that are supported by big pharma. All I can suggest is do some research and do what feels right. Diet change and herbal supplements can also be very helpful. May God bless you in all you do.

Steve Olish I have heard about Ivermectin a lot lately. I believe I will try it. Metastatic bone cancer took me by surprise. I didn’t expect that especially because we’d stopped the brain cancer. Immunotherapy worked but side effects were difficult. I’m looking to have that appointment to discuss options with oncologist but she wouldn’t recommend it I’m sure. I’ll do that research on my own🙃

Update/ Bone Mets to L4 in spine. Radio surgery in planning. More radiation. Yay…. Anybody been thru this!

PS: Now in Palliative management

I wish you both strength to find peace on your final journey! With much love ❤️!

I'm still thinking about you both. I hope you can find some comfort and peace. Please let us know how things are progressing when you can. Much love to you and your loved ones ❤️!

Garey Price An external beam radiation to lumbar. Not fun. Radiosurgery has a better chance but insurance won’t authorize until protocol is satisfied😒

Thank you for the update. I hope you get some success from the treatments. I will continue to keep you in my thoughts. Much love ❤️ to you and your loved ones!

I just got the bad news today that my cancer has spread to my spleen. My oncologist is very skeptical of trying another chemo due to the clinical trial drug I just got off of has left me too week to handle another chemo treatment at this time. I have been discussing palliative care and hospice with my team. I'm fighting another lung infection and a blood infection as a result of the trial drug. I think that the hardest part is saying goodbye to my wife of 46 years. The good times, the bad times and everthing in-between will be taking the little time I have left. I will try to make as many video recordings to my 5 yr old grandson Declan about the stoty of my life. My childhood, how my wife and I met and his mom's life. When I was first diagnosed, I tried to make a plan with Jesus and accept his will, whatever it is, now that the time is closeot becomes a bit harder. Having a close church family gives me so many people to talk to any time I need to reach out. My lifelong friend suggested that I reach out to each of my friends and tell them ho much I love them and what they have ment to me. No regrets. So long for now, I will try to reach out again. Blessings to you all and hoping for miracles for us all !! Steve Olish

Hey Steve, I'm sorry to hear about your situation. From my perspective you have been very fortunate to have spent 46 years with your wife and to daughter who now has her own family. I know it's easier to plan when you still have some time but the plan is still a good one. I think your lifelong friend has made an awesome suggestion. I hope it will be of benefit to you and your friends! I'm likely facing the same situation in the not too distant future. Maybe we will meet on the other side? I wish you strength and peace on your final journey. I'm sure that the world is a better place now than it was before you came along.

Radiation on the Mets in my spine completely cured the pain!

Ive only had 1 treatment so far about 3 weeks ago. No relief, pain accelerated, appetitive worse too. I get to speak with radiation oncology the 9th. Hopefully I met the authorization for radio surgery and hope that works.

Still holding you close in my thoughts. Take good care 💖!

Managing side effects during treatment can be really challenging, especially when they impact daily activities. It's great that you're planning to discuss pain management options with your doctor - they'll be able to suggest medications that work safely alongside your current treatment plan and consider your specific medical history. Many others in this community have navigated similar challenges with treatment side effects, so hopefully you'll hear from others who can share their experiences too.