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OK, so it's not a saga, but it IS continuing! :-)
Had my appointment with Dr. Million yesterday- she's my radiation oncologist. Met with her at St. Mark's in SLC because the doctors from Huntsman do rotations at St. Marks, and Thursdays are her days. Unfortunately, yesterday was the earliest I could get an appointment, so I took it. Lisa and I went down- Barry had a conflict, so he didn't join us.
Talk about a THOROUGH Doctor! She was very thorough, and we were very impressed with her. She didn't seem to display much emotion- very level and "just the facts" kind of person. NOT that there's anything wrong with that, and I know doctors tend to detach a bit, but it's just interesting the personalities of all the different doctors we've dealt with during this journey. She spent all the time we wanted/needed, and was very helpful. She walked us through the PET scan again, and that was great to reinforce what we had learned, and even learn a little more.
We have a follow-up appointment with her today at Huntsman, and this will be a "mapping session" in which they will create a mold of my body which I will lie in during each treatment session so as to ensure I'm positioned as they want me to be. They'll also tattoo me with five small dots (barely visible) which will serve to align the radiation to me (via lasers) each time I go for a treatment. Don't anyone tell my Bishop or Stake President I have tats- that's sure to get me released! :-) As I mentioned on my Twitter feed, I was considering perhaps a butterfly, a yin and yang, a dragon, a heart and President Obama as my tattoos! :-) OK, maybe not.
They'll also do another CAT scan so as to be able to determine the exact field of radiation, and also the depth at which to radiate in each portion of the field. Dr. Million has to be there to work with the Physics folks, the radiation folks, the CAT scan operators, etc., etc. (hence the reason we didn't do it yesterday since we were at St. Mark's and I've requested to do my treatment at HCH).
Once the session today is complete, they will begin my treatment 4-5 days later. But, since they don't begin treatment on Fridays, it looks like we'll start the following Monday (at least that's our guess). Will know more today. We'll do 17 or 18 treatments, and if we run into the Thanksgiving week, they will not do treatments on Thanksgiving or the day after, so that would push me into the next week. Dr. Million actually said something like "we're not in a rush", so apparently we're OK and we'll get this done the right way (which is FINE with me!). Dr. Million said "It's not how quickly you do it, but how many sessions you do."
Side effects are something we've wondered about, and folks have asked about. Apparently males my age are the most susceptible to nausea, so she'll prescribe a pill (actually a wafer) that I put under my tongue 45 minutes before each session. This is supposed to block the nausea, or at least minimize it. She indicated that insurance normally covers the prescription, but the pills are $80 a pop, so we're hoping my insurance will cover them (chances are it will). If not, I guess I'll carry a garbage bag around with me after each treatment. That should go over well at work!
Diarrhea is also possible, it just depends on each individual. If it happens to me, we'll manage my diet to help minimize the effects.
Fatigue, too, is possible, and just depends. Apparently weekends are good for patients as they feel invigorated with no treatments happening Sat or Sun.
So, although we're not yet "moving", we're making progress, and getting closer. We did talk with Dr. Million about how this could cure the cancer, but that it also might not, and we need to be prepared for that, given that this type of non-Hodgkin lymphoma really acts more like a chronic disease than anything else. We are booked for Jan. 19 to have a follow-up with Dr. Glenn, at which time we'll do a new PET scan, and if the cancer has been eradicated, that should be very easy to see. So, that's what we'll be praying for and working towards.
Finally, a shout out to our friends Loren and Kelly. Kelly had a major surgery yesterday at the U Medical Center, and we stopped in to see Loren while she was still in surgery. He was in good spirits, and had both of Kelly's parents and his Mom with him. We'll go back today after my appointment at HCH and visit with Kelly for a few minutes. Their kids are all too young to even be allowed in to visit, and I know that's wearing on all of them- that's tough for kids to not be able to see Mom while she's in the hospital. So, much love to the Roundys, and lots of prayers. Those of you who know them, say an extra prayer for them that Kelly's recovery will be speedy and sound, and that she'll be home with family shortly. Loren and Kelly- the Handys love you guys!
Well, we finally have a date for my consult with Dr. Million, the radiation oncologist. Oct. 22 at 10:00 AM at St. Mark's. Dr. Million has offices at both St. Mark's AND Huntsman, and the first available time was at St. Mark's on that date. I will still do my treatments at Huntsman, but I really want to get this moving, so took the 10/22 appointment.
Not sure if this means we'll start radiation treatment that following Monday, 10/26- we'll have to see. But, that's my hope, and that's what our prayers will center on now (each step brings new hopes, new prayers, and a LOT of waiting!).
On another topic- on general conference weekend Lisa, the girls and I went to my Mom's home in Roosevelt. We always enjoy going out there for conference, because it's so peaceful and quiet, and we are able to relax and unwind a bit. Conference was great, as always. Mom and I took the opportunity to tell my Grandma Burgess about the cancer (she's 98, so we feared she'd hear the news and have a heart attack), but she took it like a trooper! She's had breast cancer and survived, my Mom has had uterine cancer and survived, and now me (talk about your BAD genes!). Granny took it in stride and said "Well, I had cancer and I'm OK, JoAnn had cancer and she's OK, so you'll be OK." Good to see even my 98 year old Grandma can see that we can fight and win this battle. Not sure she'd have the strength to do it, but I do, and will! We also told Granny about my cousin Bob's wife Andrea, who is right now battling breast cancer, as well, so Grandma got a "twofer"- not that she wanted it! Andrea is doing very well, and it's interesting to have two of us in the family battling this disease at the same time. We pray daily for Andrea, Bob and the boys.
Finally, I wanted to share some wonderful support given to us by our dear friends Dave & Julie Bell and their kids- Blake, Kurt, Lydia and Ben. When we returned from Roosevelt on conference weekend, there was an envelope taped to our front door. On it was a picture drawn by little Ben, who by the way is the cutest kid in the world! He'd drawn a bicycle, as he knows I'm a cyclist, and had addressed the letter to me. Inside was a touching letter that brought huge tears (again, not like that's hard to do with me), and some stickers Dave had had done for us and other friends and family. Excerpts from the letter follow:
"Know that you are not alone. We love you. We are grateful for the way you have influenced our family for good and look forward to making many more memories of times spent with the Handys. We have enclosed a few decals we had made that we are hopeful will help you along this journey. We have replaced Lance Armstrong's "LiveSTRONG" with "HandyBESTRONG". Please note that it does not say "ToddBESTRONG" as we know that cancer affects the entire family as well as the individual. We have the decals on our vehicles and on all of the Bell family bikes. We hope that when you see them you will be reminded that you are not along and that you can draw additional strength from friends."
I've been remiss in getting my decals on my vehicles and bike, but like the Bells, I can now say that the Handy family vehicles and my bike are all decked out and bearing the message "HandyBESTRONG". I so love the Bell family!
Ben's drawing and the HandyBESTRONG logo are posted here for all to see and enjoy.
The good news first...we received word last night that the bone marrow test/biopsy was clean, and so there's no cancer to be found there. Hallelujah! That means we can proceed with the radiation treatment, and look for the potential in the January appointment to hear that there's no more cancer.
Hurry up and wait...it seems like that's been the norm the last few weeks. Along with the word last night that the bone marrow was clean, I also received the word that the radiation oncologist's office had me booked for 10/30 for my initial consult, and then would begin radiation on 11/2. I had been prepped that this week would be the initial consult (as per Dr. Glenn's understanding), and then begin radiation on 10/19.
Now, I'm a big boy, and I realize that we don't always get what we want (at least I'm always telling the girls that!). I'm also familiar enough with the healthcare world to realize that doctors are often overbooked, and oncologists may even be more so. So, if it MUST BE that I cannot see Dr. Million until 10/30, so be it. That said, if we can begin sooner, I'd like to, as I'd like to get moving on this while we can take advantage of all the blessings we've been given- localized, Stage II, grade 1 (low grade), etc., etc. In two weeks time I don't know that anything will change, but why take the chance? So, Debbi, my awesome nurse at Huntsman was going to make some calls today and see if we can get this moved up somehow. Fingers crossed...prayers offered!
Finally, let me just editorialize a bit and say that the love and concern showed by SO MANY has been overwhelming, and very heart warming. So many folks have said and done things to show support and love, and I don't want to single any out at the risk of leaving others out. But, I do want to share something today for any who are interested to take a look at. The cycling community is really very tight, and even more so a club within cycling. I'm a member of the Bountiful Mazda/Bountiful Cycling club, and can honestly say I can't think of a more upstanding, competitive, kind and generous group than the folks I share the roads with and trade "pulls" with when we're riding. Many of them are very best friends of mine, but all of them are good folks and I love spending time with them.
Larry Peterson is one of these wonderful folks in the club, and is also our club webmaster (more on that in a minute). When Larry found out about my diagnosis, he sent one of the most touching e-mails I've ever read, and hasa followed-up with a few more that have caused me to shed some tears of gratitude and love (not that it's hard to make me cry!). An excerpt of what Larry sent to me when he found out:
"Our thoughts, prayers and hopes are all aimed your direction. You will now look differently at all those cancer stories, but there is only one that matters, yours and lets make it a good one. I propose we form a “Todd’s Team” to help with your battle against this demon. What ever you need just ask and if it’s doable it will be done.
For the last two years I have been riding specifically for those battling cancer. I have a list of names I carry with me all the time. It reminds me that my suffering is nothing compared to theirs. I would be pleased to add your name to the list just below my sister’s name who has been battling cancer since 1988.
This is one race it’s OK for you to win – go do it and we will back you up."
Yeah, I know..."verklempt"! So, you see the kind of guy Larry is. Well, he's since renamed the group "HandyMen", and has enlisted some of the wonderful folks I ride with in the club. He shared with me that he's even added a tab to our club website, which you can view by clicking here HandyMen.
So, many thanks to Larry for his thoughtfulness and friendship, and to all those HandyMen he's enlisted so far. More so, thanks to all the members of the Bountiful Mazda/Bountiful Cycling club for their friendship and camaraderie over the years (even those riders who are so much better than me and routinely tear my legs off!).
RIDE IT LIKE YOU STOLE IT! Go Bountiful Mazda!
Well, I had planned to post Thursday after we met with Dr. Glenn and received the results of the PET scan and LDH test, but then I learned I had to return to Huntsman on Friday for another test (more on that in a minute), so I decided I would wait till after Friday to post.
So, here's the update for both Thursday and Friday...
Thursday Lisa, Barry and I went to HCI to meet with Dr. Glenn and receive the results of both the PET scan and the LDH test. You'll remember that the LDH test is a blood test which indicates how aggressive the cancer was. The results indicated that the cancer is not aggressive, which is good. Actually, you can argue that it's NOT good, as if the cancer were aggressive, it would be treated with chemo right now, and quite posibly could be cured. So, normally one would not want to hear that their cancer was aggressive, but in this case it would be a good thing. So, since my cancer is not aggressive, immediate chemotherapy is not a course of action we will/should take.
The PET scan results were also very interesting. The PET scan is combined with a CAT scan and shows "slices" of the body from head to toe, both horizontal (across your body from head to toe) and vertical (across your body from anterior to posterior). As indicated in my last post, the glucose and radio isotope travel to areas where they are metabolized, which is normally in rapidly active or multiplying cells, hence cancer is a place where much of the IV solution travels. Normal areas which are working showed up- heart, kidneys, bladder, etc. "Showed up" means that the scan is black, and the areas where the solution is "glows" on the screen. It seems to me to very umambiguous- if it's glowing, something's going on, if it's not, nothing is going on.
So, we saw the lymph nodes from the biopsy ("retroperitoneal", or towards the back of my abdomen down by the aorta), and they of course were glowing. No news there- we knew that's where the cancer was. But, we also saw another chain of lymph nodes which were glowing, and they were down in the "iliac" area. So, that means the cancer is Stage II (cancer staging) because it's localized in two areas, but on the same side of the diaphragm. I had understood from Dr. Glenn last week that if it was Stage II, we would not be able to radiate. So, a little dejectedly, I said, "So, we won't be able to radiate?" and she said "No. I've already been on the phone with the radiation oncologist, Dr. Million, and she's already familiarized herself with your case, and she indicates she can radiate the two lymph node chains in the same radiation field." She went on to explain that the Dr. Million's office would get with me early next week and set up an appointment. We'll meet for 4-5 hours to set things up, then starting mapping out the areas on the body to be radiated. I'll go five days a week for four weeks, and could start as early as a week from next Monday (10/19). Sessions will be 15 minutes or so, and they expect very few side effects. No expected nausea, as we will be radiating away from the stomach. Possible diarrhea, as we will be closer to the bowels, but I'm happy to have to take that risk to be able to radiate.
I asked Dr. Glenn if we would still do a bone marrow test, and she indicated we would. I asked her if the chances were that it would be a good result because my blood count is normal, and she indicated that the chances were good it would be great. The purpose of this test is to ensure that the cancer is not in the marrow, as if it is there is no need to radiate- it wouldn't be effective. We would then most likely go to "watchful waiting".
So, bottom line, we had wanted the result of the PET scan to be that the cancer was localized, and that we would be able to proceed with radiation, which Dr. Glenn indicate can actually cure this cancer, even though it's an indolent NHL and "incurable". We prayed for this result, and I know many others offered those same prayers, and the Lord responded by answering our prayers and granting to us what we had asked for. As I've told a few folks since, the only possible better outcome would have been if Dr. Glenn had pulled up the PET scan results and said "Todd, we don't know why, but for some reason the cancer is no longer in your body." Could that happen, of course it could. But, the more feasible option is that the Lord simply grants the next best things, which is the route we will take and the potential of a cure.
So, I ask you- "HOW WOULD YOU FEEL IF SANTA BROUGHT YOU EVERTHING ON YOUR LIST?" That's how I feel- the Lord granted us the blessing we most needed and asked for. I have no doubt he'll continue to do so- the bone marrow test I have faith will show no cancer, and we'll be ready to start with Dr. Million next week and begin radiation the following week.
Yesterday then was the bone marrow test. If you didn't follow the link above to read about bone marrow tests, I'd suggest you do so at this time, as it was VERY MUCH what my test was like. Not only was marrow aspirated and sampled, but a core sample (biopsy) was also taken. I have to admit I went in yesterday with some apprehension, as I've only heard bad about bone marrow tests, mostly that they're extremely painful. That may be, but it may also be that an experienced medical professional makes all the difference, and I have no doubt that was the case for me. Renee, a Nurse Practitioner at Huntsman performed the test, and was wonderful! Except for the "pin prick" pain associated with the anesthetic, I felt no futher pain. There was some pressure- how could there not be when a fit, skinny woman has to crank on a needle and press it into the hip bone of a big guy? Props to you Renee! I'd do that again with no fear if I had to (as long as Renee came along!).
Just an observation- for some reason, I've always pictured bone marrow as white/creamy in color, and somewhat gelatinous. Turns out it's red and very "watery"- basically like bood. I had no idea what it looked like, and now I know. Not that that means anything, it perhaps means I didn't pay attention in anatomy/medical subjects in my school career. Guess that's why I'm a business guy with an MBA and not a medical professional?
So, here's the bottom line- bone marrow test results next week, meet with Dr. Million to get going on the radiation, begin radiation most likely the 19th of October, and then I already have a follow-up booked with Dr. Glenn for January 19th, at which time we'll do a follow-up PET scan, blood tests, etc. and I will then meet with her. Very good chance at that time she tells me the cancer is all "gone" and that I'm "cured". I use quotation marks, as it's also possible it won't fully go away, and may not be cured, but I'd already resigned myself to the fact that this cancer may be like a chronic disease for the rest of my life, and I've already received a peaceful assurance that I'll get through it.
That's Thursday and Friday's update. Have a GREAT weekend, and I'll plan to post more when I hear back on bone marrow test results on Monday, and then start meeting with Dr. Million, etc.
Public thanks to the Lord for hearing and answering our prayers. We still have a way to go in all this, and I am cognizant of that, but I also have a strong testimony that the Lord does hear and answer prayers, and this just reinforces and substantiates that!
So...the big PET scan day has arrived. One of the girls asked, "why do they call all these things 'animal names?'" I said, "Huh, what are you talking about?" She said, "You know, CAT scan, PET scan, etc.!?" Kids...! :-)
Alright, ya'll can read a lot more in-depth about PET scans by Googling, I'll leave that up to you. This is my version, simplified and in lay terms (unless I know a big word I want to drop in here and there to impress!) [It's MY blog, you know!].
The basic premise behind PET scans is that you fast for at least six hours prior (but you can drink water). Thus your body has no food in it which can be turned into fuel for your cells, so they are "hungry". Your blood is tested to make sure your blood sugar is OK, and if it is you're given an IV of glucose with radioisotopes bound to the sugar. The sugar travels to the cells which are most rapidly multiplying and therefore metabolizing more than other cells. This means that the areas that should end up with most of the IV solution are those which are affected by cancer. Apparently when the Dr. reads the PET scan, the areas almost "glow" where the concentration of the sugar is, so that it's readily apparent where the cancer is.
So, they run the IV, pump in the fluids, and then leave me in a waiting room with most of the lights turned out and tell me I need to stay completely still and rest while the solution moves through my blood stream. So, iPod rocking in my ears, I take a nap. Except that this is not a nice comfy bed, it's a chair that reclines back somewhat, but not flat, and I'm all bent here and there. But, I've never been one to back down from a good nap. Bring it on!
An hour later they wake me, and make me empty my bladder before going in to the scan room. Good thing, cause I was in that dang scan for over 40 minutes, was told to be completely still, and was glad to not have to worry about needing to relieve myself!
So, they have me lie down on the "bed" of the scanner. I say "bed", because you're thinking pillow, blanket, nice soft mattress, etc. Yeah, right! We're talking a pad 12 inches wide or so, with a place to lay one's head. Then they put a block under the knees to help you be a bit more comfortable, and put a blanket over you so you're not too cold. At this point I'm down with all this, no big deal. But, you can't fold your arms over your chest- they need to scan under where your arms would be. So, you place your arms to your sides, rest them as best as possible on the "bed" (kind of under/next to your rear end) and they come out with a wide "strap" that they wrap around you and Velcro closed. Yeah, this is gonna be FUN!! They then proceeded to run me into the scanner (which is probably the correct medical term, I prefer to think of it as the "tube from ____").
At this point a little history might be in order. Last fall I had to have an MRI for the first (and, believe me, LAST time). Have any of you had one of those little joyful experiences? I'm not as claustrophobic as some, but I don't like to be in tight, confined spaces with a feeling that I can't get out on my own. When I went into the "tube", my shoulders are broad enough that they brushed the sides. No kidding! Can't we size these things? "I'll take an XL MRI, please?" I asked myself what a larger person than I would do- don't want to think about it. Anyway, I digress. The doctor had prescribed two valium for me to take just prior to the procedure. I'm pretty susceptible to drugs, so I took one thinking it would be enough. WRONG CHOICE! No sooner had the lady slid me into the "tube" than I freaked and had her bring me out. Long story short, a combination of some psychotherapy on her part, prayer on my part, the single Valium kicking in and sheer willpower and I go through it (mostly the prayer and the Valium I would say!).
So, shades of MRI today. I was nervous, and the first part is a CAT scan before the PET scan begins. Needless to say I flashed back, and got all nervous and sweaty (partly because they don't explain it to you, and don't give you a preview. They also don't put you in far enough to know you'll come out the other end). So, when all was said and done, it was NOT as bad as an MRI, but certainly wasn't very enjoyable as I'm stuck in this tube, with my ARMS BOUND TO MY SIDES- for forty minutes.
When the test was complete, they sent me on my way. By now we should also have the results of the LDH test (which you may remember was to indicate how aggressive the cancer is), so Thursday we'll get the results of the PET scan and the LDH test. Again, our hope is that the PET scan shows that the cancer is localized, that the LDH test shows it's not aggressive, and then that we'll do a bone marrow test and find that the cancer is not in the marrow. All of this will then enable Dr. Glenn to go to the radiological oncologists and have them determine if they can irradiate the area- which could lead to a "cure".
So, all in all a good day. It just feels like "hury up and wait". Thursday 9/24 was the diagnosis. Wait till Thursday 10/1 for Oncologist. Wait for 10/8 for results. I'm assuming some waiting after that for bone marrow test results. I always imagined when one was told one had cancer that the wheels started turning and things started happening. Had no idea that indolen follicular NHLs could actually be characterized like a "chronic disease" and could simply be monitored over time. I guess that's not all bad, but it's also strange to thing that I have cancer in my body, and we may simply "wait and watch", perhaps for years.
Lisa and the girls and I are optimistic and faithful. So many are praying with and for us, and we know and feel it. Thursday will be a good day, and no matter the results, we know the Lord is with us and will continue to guide and bless us.
Have you SEEN Huntsman Cancer Institute? What a place! Jon Sr. made his millions when he was in the right place at the right time and manufactured the styrofoam clamshell container for McDonald's for the Big Mac. Has done a lot of other things, of course, but that's what got him going. Now I'm told he's dropped hundreds of millions of dollars into HCI. GOOD FOR HIM! Beats folks who've done well and don't do anything for their fellow man.
I could argue that less mahogany trim and the decor would translate into more treatment for patients, but I digress. Jon deserves to do this place up top
notch, and he's done so in spades. YOU DONE DID WELL MR. H!
So, I'll update ya'll on my first appointment with Dr. Glenn in just a moment, but I have to share an irony that wasn't lost on me when I was there yesterday.
Lisa and I were waiting in the lobby for Barry to park his car and come in, so I ran to the restroom. As I was coming out, I was transported back to June 20th when I was coming out of that same restroom after having ridden 140 miles from Delta, UT to HCI. This was part of Jeff Warren's annual "Reno to HCI" fundraiser in which he raises millions (OK, maybe not that much, but some good scratch) for HCI. On June 20th I was at HCI helping bring Jeff in, and supporting him as he raised money for HCI. Fast forward 13 days and I get hit by a car, find out I have enlarged lypmh nodes, and start the process that brings me back full circle. You can call it irony...I know it's something else!
Now, on to what happened yesterday in my first appointment as an official "cancer patient":
I'll quote from the Lymphoma Research Foundation in BOLD, as opposed to my thoughts in regular type. Just so you can keep score...
- From Lymphoma Research Foundation; "Although some NHLs are localized to one area, most are found in other parts of the body by the time he diagnosis is confirmed." So, that just confirms to me if mine is localized and we're able to irradiate it that we're even more blessed by The Lord. THIS IS WHAT I WOULD ASK ANY AND ALL WHO ARE INTERESTED IN DOING TO PRAY FOR BETWEEN NOW AND TUESDAY. LOCALIZED WILL GIVE US SOME OPTIONS. GENERALIZED WILL NOT.
- From LRF, "A second opinion is not considered adequate unless the tumor sample is reviewed by another pathologist, preferably well versed in lymphoma." My cancer is a "low grade" (based on the size of the cells relative one to another). Grade 3 is "aggressive", grade 1 is "low grade", or the medical term is "indolent". Grade 2 is in the middle. Ogden Regional graded it a 2, Huntsman graded it a 1. I'm going with grade 1, not because it sounds better, or is better, but because that's Huntsman's grading, and I'm trusting 100% in them. From LRF, "The grade classification is important because it affects both the rate at which the disease is likely to progress and the treatments likely to be effective."
- From LRF, "A PET scan evaluates NHL activity in different parts of the body. To perform a test, a radioactive glucose tracer substance is first injected. A positron camera is then used to detect the radioactivity and produce cross-sectional images of the body. PET scans are very useful in determining response to treatment. While CAT scans show the size of a lymph node, PET scans show if the lymph node is active (still has the disease). Next week we have a PET/CT scan scheduled. It will tell us if the lymphoma is in any other areas of my body or not. Right now it's just in the lymph nodes in the back of my abdomen.
- If it turns out that's the only place it is (medical term is localized), then they'll test my bone marrow. If it's not there, which it probably isn't based on my blood tests and blood count which is normal, then they will ask the radiological oncologists if they can/will irradiate the area. From LRF, "Bone marrow is obtained by numbing the skin, tissue and surface of the bone with local anesthetic, inserting a thin needle into the pelvis or another large bone and withdrawing a small sample. The procedure can be painful at the moment when the marrow is withdrawn." Regarding radiation therapy, "Radiation therapy is a local therapy which means it only affects cancer cells in the treated area. Radiation is sometimes used alone for certain localized lymphomas, either nodal or extranodal, or may be combined with chemotherapy.
- Here's where it gets interesting- although low grade follicular lymphomas are normally curable, if it's localized and gets irradiated, it may get "cured". Go figure. From LRF, "Low-grade of indolent lymphomas tend to grow very slowly and need treatment less urgently. Indolent lymphomas, although usually exquisite to therapy are rarely cured. Despite this, patients often live for a long time with a good quality of life. Some indolent lymphomas can transform over time into more aggressive types requiring more intensive treatment. Although people with more aggressive lymphomas often require more immediate intensive treatment, their cancers may be curable. Indolent lymphomas that transform into more aggressive types are more difficult to cure.
- From LRF, "Patients with NHL that has spread outside the lymph nodes to other organs such as the bone marrow or nervous system tend to have lower cure rates compared to those whose disease has not spread.
- From LRF, "In patients with NHL, levels of lactate dehydrogenase (LDH) are commonly measured, because higher levels suggest that the lymphoma may be more aggressive and that more intensive treatment may be needed." They also drew blood yesterday to run an LDH test. I should get the results of this test next Thursday when I get the PET scan results.
- From LRF, "Follicular lymphoma which is spread (generalized) in the vast majority of patients, is very responsive to treatment but is not curable. If localized, however, follicular lymphoma can often remain dormant for years or decades, with minimal treatment. THAT'S WHAT WE MAY BE LOOKING AT, AND WHY WE SHOULD HAVE HOPE!
- Indolent follicular lymphomas don't really have a cure. From LRF, "Indolent NHLs tend to reappear, even after long term remission."
- From LRF, "People under the age of 60 generally have better outcomes than those who are older. Those who are more active tend to respond better than those who aren't."
- From LRF, "Watchful waiting is a term used when a patient is diagnosed with NHL is not given any immediate treatment for the lymphoma. The patient pursues a normal life as long as symptoms of NHL aren't present. The patient has regular physician visits and follow-up evaluation procedures, such as laboratory tests and diagnostic imaging. Watchful waiting is an appropriate treatment for some patients with follicular or other indolent lymphomas, but is genially not appropriate for aggressive lymphoma. When the patient begins to notice symptoms, or when there are signs that the disease is progressing, watchful waiting will be abandoned and more active treatment will be initiated. The patient is placed under "watchful waiting" (medical term, not something I made up) and basically until any strong symptoms of lymphoma present (drastic weight loss, itching, fatigue, flu-like symptoms, etc.) they don't treat with chemo, as the side effects of chemo are undesirable, and can actually be worse than the symptoms at times.
- Aggressive follicular lymphomas can be cured, but they also require more immediate attention and treatment, and are also more risky.
So, I'm stuck with a follicular lymphoma that really isn't aggressive, and is more of a "watch and wait", but may never be cured. It may relapse and remit throughout the rest of my life.
Net-net after 24 hours of reflection, thought and prayer- this is a blessing. I have cancer- I'll get over that! It's not aggressive, that's a good thing. It's possibly localized, and can perhaps be irradiated. WAHOO! No matter what, I'm not letting this thing get me, and I'm going to fight, fight, fight. As I've said before, "Bring it!"
Much love...
