dvdbriansr

Hey there fellow, we are just wondering how your doing. How about checking in and let us know.

Hope your doing ok,

Greg P

Keep on keeping on, dvdbriansr! When are they going to give you a rest and recovery period?

Dvd, I have had radiation on a lymph node that is at the Y in my trachea that impacted the trachea and the esophagus. I realize that this is not the same area you will have radiation but in my case the irritation to the esophagus was not too bad. What I did learn is that it depends on how accurate that they can aim the radiation. If they manage to miss your throat then irritation should be minimal; however, if they have to hit part of the throat then yes there may be some irritation. In any case I don’t think the irritation will be anything like the burns you have experienced. The irritation I did feel was like a sore throat and affected me most when swallowing. The Miracle Mouth Wash the prescribed for me seemed to take care of the irritation and others here have had similar experiences with it. Please make sure that you have some of it available as it may help.

As for a biopsy, I have never been put under for a biopsy as they have always had to go through either the lung wall of the diaphragm and the needed me to hold still during the process. Based on this I think that you should ask if it can be done without putting you under since I suspect it can.

I also think that you are absolutely correct that your team needs to be the people you go to for the final answers to questions about your conditions. This web site and others like it is a good place to go to get ideas about what kind of questions you should be asking, but most of the people here as patients and caregivers not medical professionals. I always tell people that they have to have good, honest and open communication with their team about their treatment. The more complicated your case is the more you need this communication. It would appear that both of us have very complicated cases so we both need to have good communication.

Good luck with your first radiation treatment tomorrow and let us know how it goes.

Don't worry about "pestering" me. You're the one fighting the good fight right now. I kind of hoped you'd find that you had a lot to live for.

Yeah, I know a bit about being a fighter. Always ready to fight the good fight. :-) Take it a day at a time and keep on plugging away. You can do whatever it takes.

What are you putting into the G Tube? I've two (living) friends who went thru what you are going thru. One shoved freshly made juices into the G tube. He thinned whole home made soups to go thru the G Tube. He is doing darn well. The other stuck with the Ensure crapola and he got pneumonia right after his treatment. as he was just getting back on his feet (but still with the G-Tube) his wife had a heart attack. Four years later, they are both around to enjoy the company of their daughters.

Be determined to live, be ready, and be assured that not only are there people pulling hard for you but there are those who have come out the other side. No reason why you can't too. The torture sux big time and it takes a long while to get over but you can and you do. Buck up and survive.

DVD, Hello !! Hoping your doing okay this morning.:) Today Charles has his PET Scan.Hoping the test shows the cancer is going away. I wanted to tell you I too have 2 herniated disks in my low back. Been on Pain managment for at least 5 yrs. It is depressing knowing in order to move everyday and function I have to take pills. But reckon this is just gonna be my norm.
Days that are real bad I try to make sure I nap .If at all possible.
You have a nice day!!!
Janice.

Hi - I saw your post regarding chronic pain and choosing not to opt in on cancer treatment. I have had chronic neck, back, arm and leg pain for the past 30 years. It has gotten progressively worse with 3 spinal fusions in my neck along with a titanium plate. I have gone every route surgery, meds of all kinds, PT, accupunture, deep tissue massage, cupping, biofeedback, meditation and yoga - you name it I have tried it. I even attended a 10 week Functional Recovery /Pain Management program last year. What I have learned through all this is the pain is going to be present. I understand your frustration and depression with the weight you carry dealing with pain continuously. I would really recommend you find doctors that will work with you on how to best manage your pain so you can live a more "functional" life. I don't know the nature of your pain, so I don't want to overstep but part of our program involved a psychologist that worked not only on "accepting your pain" but on different methods to alleviate and cope with your pain. I hope you might find someone - possibly a Physical Medicine specialist to help. Be careful of those billed as Pain Specialists - many are anesthesiologists by training and so they are more geared to prescibing drugs, then longer term solutions.
On to my cancer. I was diagnosed about 4 months ago with breast cancer. I had two surgical procedures followed by a course of radiation which I just finished two weeks ago.
I don't think we can compare what we have done to what you might do. it is like comparing pain. Only you know what you are dealing with. And as others have said, it is ALWAYS your option to opt in or out of any treatment. But, you owe it to yourself to find out your options and be educated in your decison.
I wish you the best. Please keep us posted.

DVD thanks for responding. I am not sure why you have to get a surgeons permission to change pain doctors. I assume it has to do with insurance but there should be a way to appeal that to the insurance company, telling them that you do not communicate well with the doctor. I would think that they would listen to you. Please give this a try as it may make your remaining time more tolerable. No one should have to endure chronic pain with all that is available to treat it. My wife wears a pain patch and has for the last five years or so. Every once in a while a doctor will question her need but no one has ever tried to take it away. If your doctors will not listen to you you can try filing a complaint with the local medical oversight board (look them up online) this should get their attention. If there is anything I can do to help let me know. Good luck.

Hello!!! I read your post. Im so sorry you feel this way. I had to write an ask you...do you have Fibromyalgia as your Chronic pain??
Im Janice, Charle's wife and trust me having pain everyday can take a toll on us. I feel for you and all your going through. Please know if I were you -I'd still do the treatment.
I hope and pray you make the right decision.
I cant tell you what to do but please,consider the treatments.:)
Here I have Rhuematoid Arthritis and the Fibromyalgia. and too the osteo-arghtritis. then 3 months ago ...hubby starts having all these weird symptoms and then we heard he now has the Hodgkins Lymphoma Stage 3E !! We were devasted. I though he would be the one taking care of me....bu t now here lately things are so changing . Then to add things we had children later...on in our late 30's. So we in all our troubles ...must get up everyday and take care of our 2 children ages 11 and 8. Somedays ...Im not sure how we reall get through the days!!!
Just a quick note but I wanted to say I hope you will do your treatments. Ever wanna talk please feel free to write me ok??? Janice Take care!!!

I'm here as an outside. My sister has newly diagnosed lung cancer and I have a friend with chronic metastatic breast cancer. I wanted to learn more about cancer and their specific diagnoses and landed here. I am in a long term pain management program (3.5yr thus far) with some strong meds for extensive spine and orthopedic problems. I've had many surgeries and at least 3 more in the near future.

Your decision regarding treatment is solely your own. Before you make the decision do research and consider all the options. Can your oncologist refer you to his preferred Pain Mgmt doc and arrange a smooth transfer? Will treatment possibly relieve pain (my sister has a tumor causing nerve impingement and pain? Chemo may reduce that tumor and get it off the nerve. AND talk to someone in Palliative care (social worker, nurse etc) to research the choice of declining / ceasing treatment. Doctors will support your decision if you show you've fully evaluated your options, understand your diagnosis, and are at peace with the decision. As a side note, I totally understand the politics of PM, it's not easy to change PM docs. Although they are PM specialists many are hesitant (or even refuse) to prescribe opioids and/or increase dosages. Hubby and I have talked about leaving AZ but my PM doc is so good I'm afraid I wouldn't find the same elsewhere.
.
Just as when we grieve for a family/friends who die and go through defined stages of grief, getting a diagnosis of cancer (or finding out the condition has worsened / spread or will require unexpected treatment extension / changes) .... All result in going through similar stages of grief / depression / acceptance.

If any of my family/friends decided to cease treatment (for cancer or other conditions) I'd understand and support the decision IF they had carefully made the decision. Once you make the decision be sure to put it in writing and give copies to your doctors and trusted family and friends.. You'll never convince everyone of your decisions regarding treatment. If you're confident and at peace with your decision, that's all that matters.

I want to say how sorry I am you have to go through all this. Life sure can be painful sometimes. I spent years going through a horrid divorce & custody battle, shortly after my mother's death. Fortunately I later married a wonderful man who supported my children & me. I endured the suicide of my brother in law, then the death of teenage son, followed by the death of my father. In 2008 I was diagnosed with early colon cancer. They got all the cancer but side effects from surgery forced me to go on Disability. I left a career I worked so hard to build! In 2009 I was diagnosed with breast cancer. All I could think of was how I would I handle treatment with all my current colon issues! I had surgery, chemo & 33 rounds of radiation. It was not fun, but it was doable. I never got sick, mostly incredible fatigue. They gave me wonderful drugs so I mostly slept. Your oncologist will make sure you are comfortable! I am 2 years out from treatment & dealing with severe degenerative disk disease & osteoporosis, mostly in my neck & back. I am typing this with my non-dominant hand as I just broke my other hand in a fall, surgery is Thursday. I am SO unhappy to have another surgery & to have even more pain! But this pain reminds me my chronic pain could be worse. And honestly, no pain I have endured physically was as bad as the heartache I continue to endure since the death of my child. It is good I didn't get cancer sooner when there was no fight in me.

Have you spoken to the Social Worker associated with your oncologist? Perhaps having someone help you sort your thoughts out might help. Also, cancer treatment is SO much better than years ago. I am not afraid to do it again if necessary, but I would not be happy about it for sure.

Also, you are in charge! Even is you start treatment, you can choose stop if you want to. My cancer center gave me a lot information to read about & everyone was very patient with my never ending questions. I guess I would hate to see you give up before the miracle happens. You will be checked so often now, your medical team just might find a way to help you with all your pain issues. I pray this is so.

I hope I did not overstep here. Chronic pain is the worst. It is no way to live and no person should be made to suffer. Only you can say what is best for you. Please be honest with your oncologist, do your research, and make an informed decision. There is no shame in changing your mind along the way, remember this. If I can be your friend on this journey, I hope you will give me that honor. You are in my prayers.

Hope your doing as well as you can be. If your still having trouble and need answers about treatments, and options please call the American Cancer Society at the number listed above in the resourses tab.

Feel free to post more questions if you have them. Others in the community can help also.
Wishing you the best.
greg

I don't have an answer at this time but I have considered the possibility that I could refuse further treatment due to lack of quality of life. You are still relatively young, there is an essence in all of us trying to keep going for the chance that something wonderful will happen in a lab that will change the management of cancer for the better. However possible live in love, those hugs and kisses are heightened by our recognition of mortality.

Welcome to the site! If you have questions please ask, be patient sometimes it takes a little while for someone with the information you need to see your question.

I certainly don't know everything there is to know about all cancer treatments, but I have been through lot's of procedures, scans, treatments of different types and radiation, through the course of having cancer 3 times, so please feel free to ask anything you like of me.

There are others on the site that are a wealth of information that you will find valuable, so ask what you need, someone will have your answer. Also, please feel free to chime in on questions that you can share some of your experience with.

Hope your doing well!

Greg
3X survivor = 2X Hodgkins 1X Head and Neck
American Cancer Society Hero of Hope Speaker

I had a tonsil get rogue on me, how about you, where is your primary?

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