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Watch and Wait.

katcat55's picture
katcat55
Posts: 3
Joined: Dec 2015

Hello,

My name is Kathy and I'm a 56 year old female newly diognosed, in October 2015, with stage IV Follicular Non-Hodgkin's found by chance during a pre-operative MRI on my shoulder for my rotator cuff surgery. 

After the MRI the technician asked me if I had anything "systemic" going on because something looked unusual in my arm bone marrow. I said no, I have annual checkups and everything has been normal. 

Due to this finding my Orthopedic doctor decided to take a small biopsy of the top of the humerus during my rotator cuff surgery. A week later my Orthopedic called with the pathology of the bone biopsy which was strongly indicative of Lymphoma. He referred me to Oncology. 

After having every lab, bone/pet scan and MRI known to man, I was diognosed with stage IV Follicular Non-Hodgkin's.  I have it in all nodes and the bone marrow of my right femur, right humerus, and the top of the left hip. My symptoms are mild but daily. Swollen glands in the neck, armpit, groin, arms and behind the knees. Night sweats, daily hot flashes, nausea, brain fog, fatigue, and aches joint/musle pain.  

My Oncoligist, at SCCA, says that as long as I can stand the symptoms he wants me to continue waiting on treatment until I get sicker because the treatment will 1) make me feel sicker because it's toxic. 2) You can only use treatments once so better to wait until you are sicker. 3) My blood work has all been normal so he is not alarmed that anything is urgently needing treatment. 

My questions are. Is this normal protocol for treatment? If so how much sicker do I have to feel before I will start treatment? How will I know if my bone lesions have spread or gotten larger,? When my arm, leg or hip breaks? Is anyone else experencing this and how are you coping with the fear and worry? 

Thanks in advance for any advice.

Read more: http://www.healthboards.com/boards/lymphomas/1027077-watch-wait.html#ixzz4OmpyBSWx

Anonymous user (not verified)

Never hurts to have 2 or more Drs. look at it. I am not a Dr. but I assure you from personal experience that the same drugs can be used more than once. Have you had a PET or CT scan? Is it properly typed and staged? If not, ask for a PET and genetic workup. You need to make sure it is only in the shoulder. DNA analysis is essential for choosing the best drugs for your unique situation. Good luck. Lots of people on here can help. Max is extremely knowledgeable as is Po. Your disease is very treatable. With proper care you are much more likely to die with it than from it. Think of it as a chronic treatable condition. Stay calm, return fire.

Anonymous user (not verified)

Can someone please post some links with info on FNHL? Can't seem to do it with my iPad. 

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3491
Joined: May 2012

Kat,

I recall your photo from a year ago when you joined. Like GKH, I recommend you get a second opinion.

As I might have written  to you a year ago, I have never been a fan of watch-wait or active surveillance. It is extremely common in the care of Prostate cancer (which I also had) and I rejected it as an option immediately.

In my reading and experience, active surveillance is very uncommon in lymphoma care.  Drugs are reused all the time, although some do have lifetime dose limits. Follicular is very indolent/ slow moving, but I would not delay treating  ANY form of cancer -- just my mentality.  I could not wait around on treatment, and it is not the norm, even if it is a legitimate practice.

GKH: I'm on a phone and cannot do links from it.

max

po18guy
Posts: 1082
Joined: Nov 2011

It sounds like SCCA (Fred Hutchinson) was the second opinion? If not, their hematopathology clinic is one of the best. SCCA  is a world-class, destination facility. Actually, if you are there Thursday or Friday, I might see you. Follicular is a chronic, manageable illness. That fact that it is spread around signifies nothing more than the fact that it is lymphoma, which might be called a "liquid cancer" inasmuch as it flows in the lymph and bloodstream. But, that same ability to spread means that it is uniquely vulnerable to treatment - much more so than so-called "solid tumor" cancers.

W&W is not doing nothing - it is active surveillance. The debate rages on, but early treatment can make it more difficult to control later on. I know of one patient (in California) who actually had a stem cell transplant for follicular. But, this is the vey first I have heard of that treatment against an indolent lymphoma. Below is a link to the follicular information page at the Lymphoma Research Foundation. They sponsor  "Ask the Doctor" seminars - I think one was held just last month in Seattle. 

http://www.lymphoma.org/site/pp.asp?c=bkLTKaOQLmK8E&b=6300155

 

lindary's picture
lindary
Posts: 695
Joined: Mar 2015

I was diagnosed with FNHL in Dec 2014. Some signs in the bone marrow but nothing like what you have. My initial symptom was a mass in the abdomen and no other symptoms. Actually I may have had some others but we had written them off to my thyroid being off. When the first CT scan was done they noticed fluid around my right lung, pluersy. My compromised lymph system was unable to drain the fluid. My oncologist wanted to start treatment asap but sent me to Rush Hospital for a second opinion before starting anything. The hemotology oncologist there recommended they treat my lymphoma as agressive. So it was 6 cycles of RCHOP. About 2 weeks after the first treatment I had a ruptured bowel. The mass had been leaning against the bowel and had been there long enough to have formed an adhesion. When the mass shrunk it tore a hole in the bowel. As a result the second cycle was started a few weeks later. Once all 6 cycles were done the scans showed the mass had shrunk but not enough so the I went to Rush for 3 cycles of RICE. Each treatment required about 3.5 days in the hospital. The scans after that came up clear but the bone marrow had something abnormal. They scheduled my for stem cell but it was delayed a couple of times and eventually cancelled. Addtional bone marrow exams were clean. I just had a set of scans (1 year after the last chemo) and they were clear. 

If I had it to do over again knowing what I know now the only thing I would change would be to have the surgery before the first chemo. Not sure the Drs would have agreed. 

Are the drugs toxic - Yes. But they gave me anti-nasea meds. (Never had nausea.) The Prednisone also helps with pain and such but it also puts you in a high for 5 days. After the 5 days you stop and there is a crash about 48 hours later.  My biggest problem was not that I felt sick. It was the constant feeling of fatigue and lack of energy. I tried to offset that by staying as active as possible. I believe it was already said that although they may only be able to use  atreatment once (like RCHOP) there are other treatments available. When the Dr at Rush told me they were cancelling my Stem Cell she also told me that if my lymphoma did come back there are new treatments already being used and others in clinical studies.  Check out the lymphoma sites for more details. Here are a couple I found useful.

http://www.allbloodcancers.org/index.cfm?fuseaction=home.main

https://cancercompass.com/message-board/cancers/lymphoma/non-hodgkins/1,0,119,57,58.htm

 

 

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