7luces7, Hope this helps.
Lessons Learned from Aggressive NHL’s DLBCL Cancer Treatment
I have gained some experience in fighting for over thirteen years with four occurrences of aggressive DLBCL cancer. I basically had the same thing four times.
Here are the high points of my journey. There were biopsies of my throat and abdomen, pretreatments for chemo, chemo, post treatments for chemo, external radiation of my throat, six months of low blood counts from internal radiation, surgery to implant a IV-port, frequent MRI; CT; CT/PET scans, X-Rays, hospital stays, multiple side effects from treatments, reaction to meds, chemo brain, peripheral neuropathy of hands and feet, false feeling of wellbeing from steroids, frequent blood draws for CBC, Metabolic Panel and others. Then there was the relentless fatigue.
Understand these were all doable and I am still here to tell about. My doctor called it an inconvenience and I can agree with him, as the alternative with this aggressive form of cancer is just weeks or months until my demise.
So what are my lessons learned about treatment for aggressive Diffuse Large B Cell Lymphoma (DLBCL?) Here are some bits and pieces. Some of these comments may apply to other cancers, consult with your doctor.
About Aggressive Diffuse Large B Cell Lymphoma (DLBCL)
Gold Standard - After being diagnosed and you are otherwise healthy, the first line treatment is CHOP+R and possibly some external radiation. If you are not otherwise healthy there are second line therapies available to adjust to your needs. I have successfully been treated with CHOP, RICE, EPOCH+R, Zevalin, Treanda+R and external radiation.
Large - In DLBCL the word large means that under the microscope the cancer cells appear large.
Starting - With DLBCL not starting treatment early can still be treatable with good outcomes.
Side Effects - Methods have been developed to avoid most of the common side effects of CHOP+R. During treatment advise your nurses when a side effect starts to appear to give them the best opportunity to alleviate your inconvenience at its onset.
Advocate - Most oncologists have a nurse advocate. This person meets with you during your office visits and monitors your status and advises you on what to do in order to minimize your inconveniences.
Loss of Hair - With CHOP+R’s first treatment after about the third week your body hair starts to go. Guys and some women usually just let it go without concern and wear a hat or scarf. Check with your doctor’s staff for any free sources donating these for cancer patients. If you want to do more go to
http://www.health.com/health/condition-article/0,,20233987,00.html “What to Do If Chemo Takes Your Eyebrows and Lashes” and follow “Health’s” recommendations. There is more about hair loss on this website; What to Do About Thinning Hair, How to Find the Right Wig and Taking Care of Your Fuzzy New Hair After Chemo. You may take this as far as you like to get to your normal. Then just add a smile and you are good to go!
Peripheral Neuropathy - This may show up in your hands and feet during treatment. It tends to resolve itself sometime after treatment. There sometimes is residual loss of feeling that remains and you have to learn to deal with it. You will learn to take care and adjust to its presence. An example is when picking up a glass place your index finger along the top ring of the glass to let you know you have wrapped your hand around the glass properly to avoid knocking it over or dropping it. Target store has Libbey Impressions Juice Glasses 10 & 8-oz that have dimples on four sides of their base that aids in grasping. They help me avoid letting the glass slip out of my hand. I took Tia Chi for three years for general health and to improve my balance due to neuropathy in my feet.
Home Safety - Place a few LED nightlights around your home to guide you safely at night. Use a nonslip mat in the shower and appropriate grab bars.
Patience - Patience is your best friend. It allows you to endure all the wait-times necessary for all the steps needed to get you into and in between treatments. Understand this is normal and natural. One big challenge the doctors have is to match your disease with the proper treatment for your safety. Give them this time by being tolerant and understanding of their needs. It takes time to fully establish an individual’s baseline function (your health status.) Your medical team’s goal is to return you to your baseline functioning when treatment is completed. Your first impression may be that they are taking mini-steps. Take a deep breath every time a new appointment when a wait-time is given to you and be patient. Only you can make your peace of mind happen.
Positive Attitude – There are doctors that agree that a positive attitude greatly enhances the effects of cancer treatment in a positive way. This is another of the few things that you as the patient can apply to improve you treatment outcome.
Good Nutrition – If your treatment has induced toxins into your body good nutrition is a must. Your body’s internal damage has to be dealt with. Your medical staff gives drugs to help but you have to remember your body requires daily nutrition and exercise. It is your job to eat healthy and exercise the best you can.
Exercise - No matter how much discomfort you have, you must move. I grant that some treatments require rest but that does not necessarily mean total rest. I found it does not take much activity and you do not have to do it in a long time period. You can spread it out so that you can avoid getting over tired. Some movement like walking actual improved my comfort level. You will find that doing nothing has no redeeming value. As you go through your treatments both you and your body learn how to better deal with the side effects. Know that your body is doing things automatically to heal itself from the effects of the toxins in the treatments. This is normal and a beautiful thing. Some of the other basics are adequate rest, good nutrition and drinking lots of water. I recommend marking on paper the amount of water you drink – it is very easy to forget how much you have actually drunk each day. Keep alert and be proactive to discover those little things that work for you. The time spent is good for the soul.
Remember you are a survivor from the day you are diagnosed. You and your doctor set the course of treatment but you must remember you play an important part. Your responsibility is the job of returning your body after each treatment as close as you can to your pre-cancer baseline function. You must be proactive in using the tools available to you. Some important tools are those mentioned above; patience, positive attitude, good nutrition, drinking lots of water, getting adequate rest, and exercise. These aid your body’s ability to detoxify and repair. Only you have control of these life restoring tools do not fail to use them.
Good luck on your journey.
Check out The China Study
I just wanted to check in with you and see how you are feeling. I know you had a rough week. If you need anything, let me know. Even if you just want to whine and complain, I'm happy to listen :-)0August 2013
7luces7, Hope this helps.
Hello and welcome, we are glad you found 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.
