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follicular lymphoma

bk1950
Posts: 43
Joined: Apr 2009

i am going for a second opinion soon and just wondering how many of you have done so. did you opt for the second opinion? my doctor has done nothing and i am in the watch and wait phase but not confortable with this. my regular doctor thinks my lymph gland is large and is now starting in 2 more glands. i am getting very nervous. any comments appreciated, thanks

Hestia
Posts: 26
Joined: Jun 2009

Yes, I got second opinion. I was not comfortable with first onc (was assigned him because I entered hosp thru ER and he was on duty that night). I saw another onc, transferred all my records and went for second choice. Am not sorry at all. First doc was very slow ordering tests to determine what, if any, cancer, what kind, what treatment. Ended up I had Non-Hodgkins Lymphoma, now in remission since 4/09. Had chemo and radiation. Went to a cancer care facility. Don't hesitate to go for second opinion; it's your health. I truly believe we need to be responsible and in as much control as possible for our own care. Ask questions, find out why watch and wait as opposed to treatment.

Good luck, hang in, many get second opinion. Smart move if you are not comfortable with first onc

jacky

bk1950
Posts: 43
Joined: Apr 2009

thank so much for your reply.

amybesunder
Posts: 15
Joined: Aug 2009

I also am going for a second opinion. I was just diagnosed with Follicular NHL - grade 1, stage 2. I like the first oncologist but I think it's good policy to talk to multiple professionals about the condition. I figure I had seven contractors bid on my kitchen remodel and heck this is my body!

bk1950
Posts: 43
Joined: Apr 2009

i go tomorrow for second opinion finally. it sounds like your follicular lymphoma is the same as mine. the first doctor says we will do the watch and wait thing. i am just not comfortable with this. why wait till it spreads. it is very stressful thinking about that everyday. i have been reading all i can and i read that radiation is the way to go if you have slow growing cancer like we do and it is still confined to one area. what have you been told so far? thanks for your reply.

amybesunder
Posts: 15
Joined: Aug 2009

Oncologist #1 has given me two choices - watch & wait or first line treatment with Rituxin. I did bring up straight radiation. It's a 50/50 shot according to my oncologist and if we use it now, we won't be able to use it later due to it's toxicity. He'd rather save radiation as a last ditch effort.

Most of what I have been reading leads me to believe the answer lies in antibodies and chemo. Of course, chemo only works when cells are dividing. But I have heard good things about Rituxan staving off the cancer for a period of time.

Evaline
Posts: 9
Joined: Aug 2008

I was dg with NHL Folicular Center Cell, Stage 3 Flippi Lg B Cell. On May 29, 2007 I had my first treatment of Rituxan, with Beneadryl, Tylenol, Steroid. Took 4 treatments, once a week. Aug. 28, 2007 Pet Scan showed no sign of disease. I took 2 years of maintenance every 3 months that ended June 2009. Aug. 10, 2009 was my last Pet Scan and, it was still clean. I go for a C-Scan in Feb 2010. Everything I have read says it will be back. I found it under my right tonsil. Growing lump that did not hurt. I would love to hear from anyone that has had the Rituxan up front on how long they stayed in remission. And please keep us up to date on your progress and good luck.

Maryreba
Posts: 9
Joined: Oct 2009

I did not do the watch & wait. In 2002 I was stage 3A did chop & ritaxin in 2008 it came back did CVP & Ritaxin stopped in 3/09 and started Ritaxin again.9/09 every week for a month than wait 6 months & do it again. PET Scans & CT scans trust them. Have faith in your doctor.

bob1118
Posts: 2
Joined: Sep 2009

I'm just getting reading to start chemo for follicular non-Hodgkin's lymphoma stage 3B. This may seem technical, but my first advice is to be an educated patient. That doesn't mean one who constantly debates and argues with their physician, but one who is strong enough and intelligent enough to take their fate in their own hands and 'ask appropriate questions'.

Bear with me as my history to this point is significant and a reason why you SHOULD seek out a good oncologist as your starting point.

About 5 years ago, hard to define with date accuracy due to the subtle onset, I began to notice my l/shoe was fitting snug to the point of being uncomfortable. In comparing my feet it was visibly obvious that the l/foot was about 1/2" longer than the r/foot. I'm a cardiac outpatient and mentioned it at my next semi-annual consult and my concern that it may be PAD as I noticed swelling in the l/ankle and calf also. He checked me and ordered an ultrasound imaging for the entire l/leg. At the same time l/inguinal lymph nodes started to swell (l/groin and l/leg sides). A biopsy was taken of a complete node in the upper l/inguinal area. That diagnosis came back as noted above this past Thursday and I immediately proceeded to a oncological consult on Friday and committed to an aggressive chemo regimen to deal with an aggressive cancer.

I have been taking CoQ10 (ubiquinone) in gelatin capsule form from a reliable source (NOT drug store shelf sources)since 2001. In 2002, after having been on 100mg dosage for 6 months and then increased to 200mg for the next 5 months my appendix ruptured. NOT just perforated. The doctor said that given the state of the appendix and my body resistance he'd estimate it may have been ongoing for as much as six months. IT RUPTURED! After my emergency appendectomy the asst surgeon was at my bedside as soon as I came out of the anesthesia. He impatiently inquired as to how and why I endured such intense pain for so long while the perforation process (infection) progressed. When I told him I had NO PAIN save for some sharp r/abdominal twinges just prior to the main rupture event he was unbelieving. He also said that what was equally amazing was that it was if my body made an irregular circle around the appendix of about 2" radius as it was all tissue destroyed by infection and the appendix was only recognizable by it's location. They had to scrape away diseased bowel tissue and keep me in-hospital for 8 addtl days on ciprofloxacin to make certain any infection remnants were killed off. The point is I should have has a rapid spread of infection much earlier on which invades the vitals like heart and lungs and sends one into a coma from whence they die. It was that remarkable an event. I explained. with clinical accuracy, what CoQ10 does to every cell in the body as to cleansing and revitalzing the mitochondria and he was totally unaware, because at that time medical schools were still not teaching anything about efficacious naturopathic/complmentary medicine. CoQ10 is naturally produced in one's body as part of it's immune system, but in insufficient amounts to counter extensive infection/disease. Many modern drug protocols wash that natural production out of your system. Statin drugs and some chemotherapy drugs are culprits in that. I digress though.

My main point in THIS response is to commit to BE YOUR OWN BEST ADVOCATE. Failure to do so will immerse you in the incompetence of a health system under attack by insurers, government and assorted advocacy groups. As a result the system has become horribly corrupted. Physicians now see the dark shadow of a lawyer lurking just behind every patient they talk to and couch each and every response with the very real concern over legal liability. Suing doctors is now a big cottage industry in America. These are pragmatically realistic observations, NOT excursions into negativity. YOU MUST understand those external forces so you can EMOTIONALLY DETACH and empower yourself to become an 'informed and educated patient'; thereby, your own best advocate. Do NOT be an "Okay Doc!" person. Get a respected opinion, get a confirming opinion and always sign releases and get copies of each and every test and procedure you have to maintain your own history. Find a reliable medical site with a good search database, bookmark it and learn what various medical terminology means. I'm naturally a positive oriented person who believes in the mind-body connection. Fear and trepidation is the shortcoming that guarantees a bad outcome. If you want to survive and are a negative driven worrywort you MUST first set about modifying your attitude in the certainty that IT is key to your survival. I have a bad form of cancer and know it. So what? I've taken charge of my future and have a life to live so will get about battling this thing, because I have many, many more reasons to live than to die. Just having entered my 70s makes me the proverbial "spring chicken" albeit cloaked in the body of an old fart, but I plod onward looking to the future, not the past. I've been down this road before and accept the challenge and spit in the eye of negativity. Isolate from those of that persuasion for they are another form of malignancy of the worst kind. A malignancy of FEAR cast upon the very soul.

Feel free to interchange at any time. I fully intend to document my experience as I go along with my chemotherapy. I've decided against my oncologist's wishes to intitially maintain my CoQ10 current dosage of 400mg daily (which I've taken for the last 3 yrs.) and observe if my side-effects are 1)less than average for this combination of drugs and 2) if the efficacy of this 'cocktail' appears to be negatively impacted. Based upon such I will re-evaluate my CoQ10 protocol continuation, reduction or not. My 'cocktail lounge" reservations call for a blend of cyclophosphamide, rituximab, vincristine and doxorubicin...chilled, but not shaken with a twist of lemon optional. Here's to us!

secretsquirrel_215
Posts: 6
Joined: Sep 2009

Hi there. I am just beginning but yes I am going for a second opinion and I am going out of my home area. I have found in the past that sometimes doctors support one another around here. I was diagnosed with nhl in my left tonsil but it appearws nowhere else, not in the tissue surrounding the tonsil or any other lymph nodes. Nothing shows up in my bloodwork, neither did anything show up in a bone marrow biopsy. I have no other symptoms of nhl. The diagnosing doctor's nurse packaged the tissue samples wrong. I heard him tell her that she should have packaged them separately instead of together. YES a second opinion is as good idea as anything. Hope all works out.

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rclaxb
Posts: 13
Joined: Sep 2010

I was diagnosed March 2009 and the oncolgist said watch and wait. I was sent to Sitmen Cancer Center in St. Louis for possible clinical trial whcih meant a second opinion. My insurance will not permit involvement in any trials but I stayed with the second opinion doctor. She recommended watch and wait. In five month another lymph node removed and she recommended R-CHOP. I did it Nov.-March 2010. I am now on Rituxan maintenance for two years. I encourage anyone in the same situation to go to a well-know cancer for a doctor and treatment if at all possible.

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