The Lymphoma Club

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The Lymphoma Club

Since 2010, The Official Lymphoma Club (public page) shares Hodgkin's and Non-Hodgkin's Lymphoma stories and info. Page not intended for medical advice

The Official Lymphoma Club™ (Hodgkin's and Non-Hodgkin's) focuses on sharing positive stories of Lymphoma patients, survivors, families and caregivers. We are a club of Lymphoma (Hodgkin's and Non-Hodgkin's Lymphoma) warriors, survivors, family, caregivers, friends, supporters and awareness advocates sharing our experience with chemo/cancer, tips including life after cancer issues.

05/05/2017

: After you ring the "chemo bell" or had your last treatment, most patients feel happy about the journey being over. However, months to years later, some cancer survivors struggle with a real issue known as cancer-related post-traumatic stress disorder.

Here are some tips to manage PTSD (source link at the end of this post):

1. Stick to your PTSD treatment plan
2. Get enough sleep
3. Exercise regularly
4. Eat a healthy diet
5. Avoid caffeine and ni****ne
6. Don't use alcohol and drugs to cope
7. Learn new habits
8. Surround yourself with supportive people
9. Considering joining a support group

We highly recommend that you seek immediate help by informing your doctor so he/she can start a treatment plan for you. Ask for a therapist recommendation.

***Read about the signs of PTSD and managing PTSD at the following link: www.breastcancer.org/treatment/side_effects/stress_disorder (NOTE: although the link is a breast cancer site, its information is universal). Another link I recommend is www.cancer.net/survivorship/life-after-cancer/post-traumatic-stress-disorder-and-cancer

05/05/2017

: "I have DLBCL (Diffuse large B-cell non-Hodgkin's lymphoma). I have had three rounds of R-CHOP so far. I am having a repeat pet scan this week to check the retroperitoneal tumor and spots on my lungs. They said I will either need radiation or three more rounds of chemo. In your experiences, do you think chemo or radiation is better in terms of side effects and long term effects on your body, veins, or overall health? Any insight on this would be appreciated." ~Lance

05/03/2017

: "I have just been diagnosed with Follicular lymphoma. I am scared. I'm waiting to get my petscan done so we can know what stage and what's next. Any advice? And anyway to get rid of these horrible sweats?" ~Christine

05/03/2017

: "Fellow Warriors - Be Strong - Have Faith! 2 years ago...Thank YOU Lymphoma Club! You have been my lifeline!!!

Hard to believe 2 years ago this week I got that painful call on a Sunday night - "I'm sorry but it's Cancer". And then just a few months later I'd get The MOST amazing news ever "The cancer is gone, not a trace" Non-Hodgkin's Lymphoma. Diffuse Large B cell.

1st picture w/daughter Mia, 12 at the time. Life was grand! Little did I know in just weeks I'd learn I had cancer and life would change forever!!

2nd picture with Sasha, our 16 yr old son. My ROCK. Beach Lax! My hair was already falling out by the handful. Shave time! But I didn't miss 1 Lacrosse tournament that summer!!

Family, friends community - my love and Tx. The Lymphoma Club was my absolute lifeline! A former, dear colleague from Amnesty International, Vienna Colucci answered my messages and understood from her brother being a warrior! My adopted son David Sagastume would pick me up from chemo and take me around to jobsites! Didn't miss one day of work.

Reflection is therapeutic in small amounts and at the right times. And mainly... to remind you of TODAY, this Minute and Moment and how God has truly blessed you!" ~Jodi Longo Bujak

05/02/2017

: Here are some chemo brain suggestions that may help you to function better in spite of it. What are your tips?

1. Accept that you will have anxiety at the time of diagnosis and for some for months to years after you finish treatment, even if you are doing well and are cancer-free. This is very common and may affect your concentration.

2. Try to sleep as much as possible. This will not only help you tolerate your treatments, but it may also help with your clarity of thinking and organizing. Consider an evaluation in a sleep clinic, if necessary.

3. You may notice you are better at tasks you’ve done for a long time, but struggle with new tasks. Try to prepare for your days to limit surprises — such as multiple, unfamiliar activities.

4. Limit multitasking. You may have to rethink how you multitasked in the past. Be present in one task, and limit distractions such as email and texts, because the minute you divide your attention, you may need to start again from scratch — and everything will take longer. To keep track of everything you need to do, write things down. Use those Post-its.

5. Try doing crossword puzzles, Sudoku, or other games while you’re waiting for appointments or have some down time. Choose activities you enjoy at a difficulty level that is challenging, but not frustrating.

6. Start doing some regular, moderate activity daily. Start slow, and build up in doable doses.

7. Consider participating in a clinical trial if one is available to you that may give better insight into the causes of chemo brain and that may identify potential treatments.

Source: http://www.everydayhealth.com/columns/jennifer-litton-the-breast-doc/tips-for-coping-with-chemobrain/

05/02/2017

"The treatment enveils you in a blanket of hope, fear and quiet desperation, but you continue to put one foot in front of the other and move forward. There are no guarantees, but standing still is the greatest fear of all. Even if you are fortunate enough to reach the survivor stage of the treatment and recovery, the very thought of it all stays in the back of your mind. That is why you feel so deeply for anyone who is still going through this ordeal, anyone who has been there, and for the families of those who did not make it through to the other side. Yet we are still a 'fraternity of hope', a 'reservoir of strength,' and true believers in a brighter tomorrow!" ~P. Morning Bear DéMarks (2012 quote from Lymphoma Survivor)

05/01/2017

: CELEBRATIONS! It's May 1, a new month! It's time to share your Lymphoma survivor milestones/celebrations, remission status, end of treatment accomplishments and birthdays/re-birthdays for the month of April in our comment field below. Congratulations everyone!

04/30/2017

"I was diagnosed with t-cell large anaplastic alk negitive lymphoma in may 2016 , I have won my battle, but in the time of my chemo the only thing that kept my going was planning the wedding of my dreams to the man I love. I had my last chemo Sept 1st and on the 17th September we were married. However, I was told that I had to postpone my honeymoon until after all treatment has finished, so here we are the start of a new life, a second chance and kicking it off with our honeymoon in thailand." ~Vickie Stephenson

04/30/2017

: I had my last round of chemo today! Diagnosed with stage IV Non-Hodgkins Lymphoma January of 2017. Had 6 rounds of RCHOP. Next is another CT scan to see the progress. Hoping for more good news. It's been a long journey but it's not quite over yet. But the worst of it is over!" ~
‎Laura Sydnes‎

04/29/2017

: For anyone who is about to undergo a bone marrow transplant or stem cell transplant, check out this helpful guide in PDF format explaining the transplant process, what to expect and how to get through it athttp://www.nbmtlink.org/documents/sg.pdf

04/28/2017

: It's Foto Friday Spotlight....This post is for pictures of you celebrating milestones, end of treatment, remission parties, recognizing start of treatment, etc. ⭐➡Add or re-add your picture by commenting below and share a brief story.

04/27/2017

: "My sister will be having a autologous stem cell transplant in the near future. What are some questions we should ask her transplant team? What are some things she should expect? I have a list of questions already but I will take any suggestions! Thanks." ~Jennifer

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