I am growing concerned at all the new posts where Chemo is the first choice for slow growing (indolent) forms of Lymphoma, even when it is stage I and grade I. I know personally how afraid you are when you hear the words incurable form of cancer. The panic sets in and you place your complete trust in what the doctor is telling you has to be done. But with these indolent types you need to be presented with all your options and that requires a little reading on your own, and even getting a second opinion. I am proof of what a difference getting a second opinion makes. Completly trusting my first Onc I had a port put in and tried to mentally get ready to start chemo the following week. But because of an earlier mis dx I felt unsure about everything and decided to get a second opinion. Though my dx remained the same, my treatment options changed. I was never told there was something called Wait & Watch from my first Onc. I don't believe this info was withheld for any reason other than chemo was the way this doctor always treated. A new body of stats are showing that people with indolent forms of cancer do as well on W & W as those who recieve chemo. Because I may someday need to do chemo if my desease progresses, I am even more grateful for this time drug free. I understand that not everyone is a good candidate for W & W because even with the indolent forms, everyone differs, but I just want the option out there and given to the patient to decide and weigh the options, especially in the early dx stages often controlled by fear. Kathy (Austin)
God bless you for posting this information. I agree with you 200% that second opinion is very important and necessary. It avoids a lot of emotional battles. Thank you very much. God bless you always.
Hi Kathy,I have indolent and have done so much treatment because mine keep returning and the itching is awful!My onc will treat when symptoms are present.He always asks me though if I want some treatment.Truly agree with you.Take care,Michele Dx95FNHL3
I have spent the last couple of weeks off from work due to fatigue, itching, a feeling of walking through sand and a general feeling of no energy to get out of my own shadow. So, I have had major time to read these posts, digest the information.
I remember my first visit with the Oncologist. He mentioned Chemo or Watch & Wait. Of course I said chemo. I couldn't imagine waiting with cancer in my body. So, I went through chemo and reached remission. If I had to do it all over again, I would have waited. I did not know about this site at the time. I had 2 golf ball size lymph nodes removed from my neck in Nov. 2007. Results were clean. They did grow very fast in 30 days. I am wondering now if I should have had a second opinion on a negative result. In April 2009, a lymph node showed up on my mammogram. Biopsy show NHL follicullar. Further testing showed 6 more nodes, hence stage 3, grade 2.
Question to Kathy and all others, I understand that this "waxes & wanes". So, you would not necessarily treat each time. It can regress on its own. That is where the waiting comes in. I had these symptons last July and August. My lymph nodes swell during this time, but PET scan showed no active cancer cells. Outward signs such as itching, fatigue and weight loss occur. No appeitite either. I see the Oncologist next Friday (Good Friday). So, does that mean my visit will show good things?
If this is active again, not sure if I will treat yet or not. I have learned that I need to shut my self down eariler than try to push through. I have lost a lot of work time.
Enjoy the day to all.
stitches_87
You mention lymph nodes that did not show up on scans am I correct?This did happen to me a couple times.A few months after Pet/Ct scans there have been times when I felt nodes pop up out of nowhere.This last time had 4 drs check{not onc} and said thats nothing so after going to ENT he has an MRI done.Wow that showed lots of nodes deep inside.I was horrified.Had ENT do a biospy and low and behold it was FNHL3.This really annoys me that my scan was clear just before this.What I’m saying is this is supposed to be a SLOW growing cancer indolent and this is not the first time that has happened.So with that said scans aren’t fool proof either. My NHL in recent years has never" regressed" on its own without treatment.My last round of solo Rituxan was 2010 so I waited a year watching this huge lump grow out the side of my neck!Which leaves me doing Treanda/Rituxan which is WAY stronger the Rituxan alone.The only time I ever had weight loss was when I was diagnosed and after Chop . Fatigue well I was working 2&3 jobs 7 days a week so I naturally thought it was from work.DA!Thing that bothered me the most was the severe itching.Everyone needs to do what they feel in their heart or in my case gut feeling.My best to you,Michele dx95FNHL3
I noticed a lump on my neck last year at the end of November. By January, I had a diagnosis of CLL/SLL. When I first found out it was NHL, I was optimistic because I read it had a high cure rate. After doing more reading, I discovered it was an indolent, non-aggressive form of NHL and that it didn't have a cure. That was a hard knock to take. I had a difficult time getting a diagnosis, the ENT first treated me with antibiotics. That is the protocol but I knew it was not an infection as my mother had lymphoma, but I waited the two weeks before finally getting an MRI. Because of the holidays, the MRI wasn't read for 10 days. Unable to wait until my Dr. appt. 2 weeks later, I drove to the MRI office and picked up the report myself. That's when I found out that the exam was highly suspicious of lymphoma due to diffuse lymphoadenopathy. When we finally went to see the doctor, he recommended a fine needle biopsy to find out what kind of cancer it was, but the appt. was never made due to a severe ice storm that hit the area and shut everything down. I was freaking out and finally was able to see my GP a week later to get some xanax - can't tell you how much that helped! The people at my GP's office were able to schedule the FNA a few days later so I was finally going to get some answers. By February I had my CLL/SLL diagnosis. The nurse at the ENT office called me and told me I needed to call an oncologist, I asked her what I had as I hadn't received the exact diagnosis yet. To be honest I can't even remember what she said because I was in shock. I don't think it matters how you find out, whether in the office of a caring physician or over the phone or from an impersonal MRI report, it is always shocking. So from finding the lump until knowing it was CLL, the total time was 2 months.
My first Onc was a local doctor, very convenient and very personable and we both liked him very much. He wanted to start treatment right away. He didn't say what the treatment was (at least I can't remember if he did) but I do remember that he said it would be 6 weeks and it wouldn't make my hair fall out. As if I was really worried about my hair! But, we both felt like we needed a second opinion so we saw an Onc specializing in lymphoma and BMT at a major cancer center. He was also very personable, patient when answering all our questions, and we liked him very much. However, only downside was not very convenient but who cares when its your life.
Anyway, he suggested a watch and wait approach as my bloodwork was ok and my ct scans showed lymph nodes that were not big enough to treat. So we went home to wait another 3 months until the next appt. (in May) I can say that the past couple of months have dragged on like years, just waiting for the s--- to hit the fan. The waiting was driving me crazy so I began seeing my GP every few weeks (who is great!) and he does a CBC with me and goes over my bloodwork when the worry gets the better of me. I know I am probably overdoing things a bit but I am not used to this disease yet and haven't been able to find a new normal.
So far the bloodwork remains fine, but the nodes in my neck have really been bothering me. I heard about the "waxing and waning" thing, but since I have been diagnosed I haven't had any waning, only waxing. The main lump that I first discovered on my neck has remained the same size, but the smaller nodes in my collarbone area (both sides) hurt all the time. Also, I seem to have developed some type of busitis in my shoulders but I don't know if the two are related.
I am on the fence about treatment. On the one hand I want to be able to wait as long as possible, but on the other hand the pain in my nodes make it difficult to enjoy the things I used to do. I just try to work through the pain.
My last bloodwork was better than previous, red counts all much higher and well within normal, and %lymphs much lower, almost normal. So I can't figure out why the blood gets better but the nodes get worse. I have not had any itching or fatigue and my temperature remains always below normal (around 97.5)
This is the weirdest disease I have come across as far as how individualized it is. My first Onc's mother had CLL/SLL for 23 years and finally died from alzheimers. My GP doc has a patient who has had it for 15 years, hardly ever goes to his Onc anymore. My daughter's college professor has CLL and is a marathon runner, actually ran marathons for 2 years before starting treatment. Still runs through the treatment, just not the first few days. Most of the accounts I have read about people with CLL/SLL and other indolents have been positive, not negative so I try to keep that in mind. I stay on the computer most of the day and it is tempting to read as much about this as possible. Occassionally I come across some really scary things so I avoid them as much as possible, but like I said the majority of stuff is positive.
I have also been checking out the clinical trials going on in the various cities around the country. You wouldn't believe all the new drugs and treatments that are being researched, some very close to approval and many in the final stages of testing. There is more of an antibody and immunological approach being looked at in addition to chemo, and I feel like the cure (or lifelong remission) is very close, within months, not years.
I always expect the worse when I see the doctor, and then it turns out not to be so bad. Usually good things happen!
Hi all, Stitches & Jlalaska, thank you for your posts. These indolent forms are a huge pain in the arse! To treat or not to treat, that is the question? I call them "flare ups" (waxing and waning) because with me there seems to be no reason. Out of the blue my neck cords get sore, my neck itches, face gets red and I feel achy and just want to sleep. Then it's gone. I am so lumpy, like an ol feather bed, that I know longer can tell what are nodes or changes in fat deposits. Not putting myself down, just speaking the truth. Jlalaska your experience was so simular to mine I couldn't believe it. Between Onc vacations and waiting on tests my brain found it hard to wrap around what anyone said, except treatment, which made sense to me. Why would I leave this stuff in my body when there is a drug that could kill it? The first and second 3 month waiting periods drove me nuts and all I did was read. I was even reading medical journals and papers published by research teams. Anything about SLL/CLL I would read. Of course most of what my pea brain could glean was pretty much what my Onc was telling me. Unless there are nodes compromising organs or a spread in your bone marrow, there is no reason to treat with chemo. Ross really helped me understand this when I read an older post of his about why agressive forms respond to Chemo and indolent forms don't. He was very visual when he talked about how cells that grow and change rapidly are open to taking in drugs during that morphing period. The drugs can get in and kill the cancer cells. It is because they can predict how these cells split and grow, they can get a window of opportunity for treatment. Our guys on the other hand are lazy little bastards, hanging out here and there. Hmmm maybe I'll split, maybe not. Hmmmm, not today.....(Ross didn't give them personality of course) Because of the nature of our beast we would have to be receiving drugs for years (something our bodies couldn't survive) in order to kill all the little bastards...So if you treat before your vital organs are having issues, you will kill some of them, but you will also suffer the affects from the drugs, which come with their own bag of tricks...only to find out a year later, not all of them were killed and now have shown up somewhere else.
So I do understand both sides of this and if one of my two nodes in my groin area that were still growing on my last visit, if they are even larger by June, I may opt for treatment. But then there's a guy who postied that has SLL and he has this huge node growing in his groin area for years and he still isn't opting for treatment because it isn't causing any other issues. Me, I'd want that big guy cut out.
So here's a question, why don't they cut these suckers out when they find them? Why drugs or radiation? Anyone? If something is sitting there full of cancer in your lymph system, why not cut it out?
Anyway, thanks for listening to me go on and on. Too much energy drink...You both have a great weekend and thanks for sharing, it will help others starting out, Hugs and smiles, KBeale