Introduce yourself!

Why not to start with introducing yourself to the community? You can write about your condition, life experience.. also can ask own questions here: healthunlocked.com/write/fi...

[PeterP54]

I am Peter. Diagnosed with PSC in the 90's which lead to a liver transplant in 2003. In 2013 I was diagnosed with PTLD (non Hodgkins) in which my immunosuppression regime was implicated as a cause (known but very low risk). I reported my initially very mild PTLD symptoms to two doctors but neither spotted anything untoward. A week after the second doctor found nothing the symptoms suddenly became more pronounced. Within another week a tumour had been found and treatment (CHOP-R) started. I did not find the side effects of the treatment to be too bad. Yes I got tired, my hair fell out and my mucus membranes were sore but I was not nauseous.

I have some ongoing issues: I get tired, do not sleep well and have a stent draining one of my kidneys that has to be replaced twice a year under general anesthetic (thank god) . But all this is better than the alternative.

The treatment at St James's in Leeds was fantastic and follow up at Salford Royal has also been first class. I feel very fortunate and grateful.

[wmay13241]

My wife was diagnosed with follicular lymphoma in November 2011. She responded but then progressed within months of R-CHOP and BVR. Then she had Ibrutinib and Idelalisib/Rituximab. She responded to both for about a year then progressed. Now she is in complete remission after her 3-month checkup for an NIH CAR-T clinical trial (NCT02659943). At the time of the CAR-T infusion on March 2, 2016 she had low tumor burden. Only insignificant side effects following infusion probably due to the low tumor burden. Her only lingering problems are low immunoglobulins (had one IVIG in March 2016) and has moderate fatigue, particularly in the afternoon.

[maria50ec in reply to wmay13241]

I find this very interesting as I am currently on Idelalasib and awaiting first scan result on Monday after 3 months. I've had NHL for 7 years now and have had most of the treatments you mention + stem cell transplant, which have all given short-term remission, about a 1yr/18 months being the longest at the beginning. If Idela isn't working I think my next option is a clinical trial at Southampton, there are two open which i could be eligible for. it is heartening to hear your wife's involvement has been so successful for her.

[maria50ec]

My details are on the list of members already but I am now 7 years since diagnosis and currently on Idelalasib so reaching the end of treatment options. I have CT scan result due on Monday after 3 months on Idela to see if working. If not, probbaly clinical trials at Southampton are next stop.

[MaddieB]

Good morning! Maddie B here in DE. Stage 4 NHL---Sept 30 will be 6 GLORIOUS yrs in remission! It's been a long hard battle. Had to learn to walk again. Hospitalized 68 days. Lots of nerve & muscle damage. Will never be the same, BUT, I'm here & very, very thankful!

[985120020730964 in reply to MaddieB]

Maddie,you have done so well at 6 years in Remission Stay well and safe. Thank God you are still here

[2255]

Hello everyone so glad to find a support group. I am a 57 year old Female with Double Hit Follicular Non Hodgkins Lymphoma. Currently in Remission since March.

[lindaforever]

My name is Linda,marginal zone Hodgkin lymphoma,had over 100 blood transfusion,numerous node biopsies,spleenectomy,three rounds of chop,in remission 8years.

[985120020730964]

Hi my name is Valerie. My Non Hodgkins Lymphoma started in 2011 I was going to my Grandaughters went to the car and tripped over a brick cut all my face and teeth,i did not feel too well after that. I had blood tests which were only 7 and my Doctor admitted me to hospital with enlarged spleen I had 3 blood tranfusions. gave me steroids. Then I had bone marrow test by the time it came back I had stage 4 NHL Spread to Lungs Liver Bowels spleen and boe marrow. Had 6 chemo,s of R Chop I was then in Remission for two and half years. Then it cam back Aggressive B Cell NHL had more chemo but kept getting infections I had diorrohea for 13 weeks then infection finally had phneumonia I was dained. Then thankfully I am in remission again for one year now. So peeps keep strong .

[dermnurse]

Hi I'm Nancy Ruiz,

In November 2015, I lost my aunt, who was like a mother to me, from T cell lymphoma. In September 2015, after being 11 months in remission, my follicular non-Hodgkin’s lymphoma relapsed extensively. Cancer has been a life altering event that has affected every aspect of my life. I experienced many of the feelings that I had when I was initially diagnosed in May of 2012. Feelings of shock, disbelief, anxiety, fear, anger, grief and a sense of loss of control. Getting a cancer diagnosis for the first time is bad enough. But hearing that it’s back can take an even bigger toll.

I restarted chemo-immunotherapy on Dec 3, 2015 for a total of 6 cycles until April 2016. I have faith and hope of accomplishing a long remission. I am aware that it’s going to be a long and difficult journey. I trust God, my family, my friends and my wonderful oncology team at UF Health Cancer Center in Orlando, Florida to help me get through this ordeal a second time.

As a retired Registered Nurse, I remember caring for patients with cancer pain, the terminally ill, and also helped them through the side effects and adverse reactions of treatment. I didn’t fully understand the courage it took to battle cancer every day until I became a cancer patient myself. I can relate to and feel what they went through together with their families.

Working in oncology, I remember having a young patient with lung cancer. At one point, as I sat next to his bed with his wife and young children around him, I couldn’t hold back my tears. I felt embarrassed about crying and thought, “I should be strong and supportive for the patient and his family.” I apologized to his wife, and she told me, “You wouldn’t be a good nurse if you didn’t care enough to cry with us.” Now I see in my doctors, nurses, clerical staff and volunteers the same commitment towards my family and me.

A serious illness certainly will change the way you think about your time, but why must it take something like this to happen? Sometimes you think it’s a blessing to be given this experience in order to value both time and life in a way not previously experienced. As a patient, I will focus on what is meaningful in my life. I value the relationships I have with my family and friends and don’t let things go by without fully experiencing them. I am grateful to God for every day I have with my family and friends. So valuing each person in my life and each experience is extremely important to me.

As a cancer warrior and survivor, I appreciate the small things in life and value myself more than ever. I will not let cancer become the main dish in my life. This time, I’m in charge and confident with my new treatment regimen. There will be side effects, symptoms, good and bad days. The other side effects, while not visible, can be just as challenging–fatigue, nausea, and chemo brain (the mental and cognitive difficulties associated with treatment, which is one of the most frustrating side effects of chemotherapy).

I will focus on one day at a time and one treatment at a time. I will maintain my faith and a positive attitude and recognize that each treatment is a closer step to remission.......

[laylalulu]

Hi my name is Linda, I had splenic marginal zone NHL, I had my very enlarged spleen removed, no treatments, on watch and wait. I had 50% involvement in bone marrow, and 1 or 2 lymph nodes in my stomach affected. I still do not know what stage I was at the time. I will be asking at my next yearly appointment. Feeling well except I tire easily. Anyone else out there with marginal zone? Blood work showing good results, but I still worry, not obsess, about it returning. thanks

[Faithoverfear]

Hi! My name is Ruthie and I was diagnosed with small cell indolent NHL (stage 4) on February 28, 2015. I am currently on the Watch and Wait protocol. I really love the idea of connecting with others who understand what this feels like

[Josie2rulrs in reply to Faithoverfear]

Hi I have low grade follicular lymphoma. I am stage 1 also watch and wait. I wish we can just go through treatment and be cured my name is Josie

[Faithoverfear in reply to Josie2rulrs]

Hi Josie! Since my NHL doesn't currently have a cure, I guess the Watch and Wait is the best scenario for me. Chemo treatments will, hopefully, put me into a temporary remission when the time comes.