Mimmi

Hi Mimmi.......How are you doing? I haven't seen you post in awhile. You asked me about supplements. The only ones I take are folic acid, calcium and D3. Have you seen your Dr. lately? Gymmom (aka Donna)

Hi Mimmi, I just thought I'd check in. You asked about scans. I finished Chemo in November. Had and MRI in January and a PET in March. I saw my doctor last week, and I will be having a CT end of September. I think I glow in the dark. ugh.

Hope you're doing okay. Check in and say hello when you have the time.

Gymmom (aka Donna)

Hello and welcome, we are happy to have you with us. Please feel free to join in the conversations. Here is a link to our cancer dx page for your type of cancer. Take a look at it to get you started on some information. You will notice at the bottom of that page 4 of our active users who have had that journey already, you may wish to contact them for their experience and wisdom. Also, I encourage you to go to the questions page now by clicking on the questions tab at the top of the page and post what is the most pressing issue you have right now. This will introduce you to the community and get you started on the help you need right now.

https://www.whatnext.com/conditions/cancer/non-hodgkin-lymphoma-nhl

There are also subtypes listed on this page to narrow down the type of cancer to match your dx. Also, if you can take a few minutes and fill in some details of your journey so far, it will help others as they try to answer questions for you, it also helps others as they search through the data base to find someone like themselves. Confirming your email will allow you to receive updates and notices from the site when someone answers your questions or writes on your wall. Thanks for being with us and let me know if I can help you find any information on the site. After you have an opportunity to look the site over and see what great things there are here, we encourage you to invite your friends, family or anyone you know that may be helped by the connections on WhatNext to join the site also.

Just click this link to invite them to join. http://www.whatnext.com/recruit-a-friend

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GregP 3X Survivor
WhatNext Community Mgr.

Your are now in the phase to live your life and not your cancer. Work at getting back as near as you can to your previous normal. Take it slow and easy and just keep working at it. You are probable not yet at your new normal. Challenge yourself and take the so-so level of eating to a higher level because you are what you eat. Eating "right" is the one thing you can do to help yourself improve.

Here is my latest find that works for me. I am ready to become the poster child for Acupuncture. It worked for me is the reason but remember everybody is different.

Good luck on your journey.

PS, I hope the vote today goes your way.

My fifteen-year cancer journey has enlightened me to the fact that in the long-haul it is self-management that is my strongest card. My medical staff has done and continues to do a superb job in keeping me alive and comfortable during and for some time after treatments for my four occurrences of cancer. I was fortunate to be told there was no longer evidence of disease after each episode. It is dealing with the negative effects of the cancer treatment’s both long-term and late-effect, where more cancer survivor support would be helpful. Unfortunately, there are not many AAA type businesses for human-body shop repair and maintenance of cancer treatment side effects.

For years I have dealt with these lasting infirmities using treatments I call the “Hale method of brute-strength and awkwardness.” I choose to not elaborate on the details of my efforts as they often have resulted in negative outcomes. As Thomas Edison said “…failure is just another way of doing things…”

The search was on for what can be found to be operative for self-management beyond my medical team’s recommended things of nutrition, sleep, exercise, mindfulness, helping others and possibly some of those “maybe this will help” pills.

My condition after my first and second set of treatments produced a new normal each time that was workable. After a few months I resumed most activities. There were the lasting symptoms of fatigue, chemo brain, dry mouth, trouble swallowing and peripheral neuropathy that took time adjusting too. I was retired and could do work-arounds on the bad days. Most of the time everything was alright. Overall it was manageable and better than being under the grass.

The third and fourth occurrences took more time to get over the chemo side effects; then I found what my new additional long term side effects were. The most annoying new effect was my mornings had periods of monetary vertigo with head movement. This was random and did not occur every day.

The most limiting new effect was my new intolerance to temperature change. As a result I no longer can be very long in warm sun without going into heat exhaustion. Likewise I am extremely sensitive to cold. Further, the fatigue is to the point I can no longer be as active to keep physically fit. I do miss this as I have always been active.

With these side effects my medical team has no responses or treatments. There are now medical researchers working on treating cancer side effects both long- term and late-effects but they are not ready for prime time.

This was when I decided to start researching for current approaches to self-management. I reviewed what complimentary medicine was offering starting with, massage and chiropractor. Then came classes in meditation (mindfulness,) and a six week class in living a healthy life with chronic conditions. Next was a few years working with a doctor of health sciences using bioidentical hormones.

The massage, chiropractor and using bioidentical hormones did not prove fruitful. The Chronic Conditions workshop did give me better tools to deal with my existing issues and helped me to live my life and not my chronic circumstances. I got to thinking that everything could be returned to normal is a bit of a stretch. My search activities have now been in progress for the last five years and I was running out of choices I was willing to peruse. There was naturopath and acupuncture still on my list.

During this last year a new late effect occurred in my neck that amplified what was already there -- meaning the vertigo issue. I went to many doctors during the year and the ER twice and no one was able to recommend treatments other than those I had already tried.

My condition continued to worsened and I decided to seek an acupuncturist. I felt this was my last resort. I started receiving treatments using needles and cupping. With each treatment I received relief. This was the first sign of any reduction in five years for the vertigo and finally a reduction in pain in the neck and shoulder. With each trip my symptoms are fading away.

After eight treatments I am much better and do not require as much sleep. Most importantly, I can now enjoy my daily life and am more eager to do things that were difficult before having acupuncture. I plan to continue on a maintenance plan. Finally something worked for me.

It has been worth the long struggle to get some rewards. I suggest considering taking the reins of self-management for your long-term, late-effect situations or other chronic issues and toughen up to this medical reality: Be careful but become your own advocate.

“Believe in possibilities. Believe in human potential. Believe in yourself and you’ll have the power to change your fate.” - Kevin Ngo

Welcome to the WhatNext family! The WhatNext family is made up of people like you who are looking for help or looking to help others. To help you along your journey the WhatNext family has put together a Beginner's Guide to Cancer that I highly recommend you check-out here: http://bit.ly/10BQKCi. Also, please do not hesitate to reach out to others or ask for help.

Wishing you the best.

David
Founder, WhatNexter