Well, tomorrow is the big day. I go in for my rotator cuff surgery.
It's about dang time. It happened weeks ago. X rays, and MRI, consultations with a couple of orthopaedic specialists, and it's finally scheduled.
The surgeon says, based on the MRI, I probably tore the same tendon sometime in the past. I'm not surprised; I've had trouble with this shoulder for years. He said it's rare to see that in someone so young.
So, just in case you've lost track: I have a 46 year old body, with 65-year-old lymph nodes, and 70-year-old supraspinatus tendons.
On the plus side, I'm in good company: the Wikipedia page for Rotator Cuff says the injury is common in people with jobs that require repetitive motions, including cheerleaders, football quarterbacks, and fast bowlers in cricket. So, basically, I'm down with the popular crowd. It also affects orchestra conductors and drummers, so I hang with the music nerds, too. Really, this injury makes me one of those cool kids who gets along with everyone. I'm the Prom King over here. So I've got that going for me.
One slightly weird thing that happened last week: the ortho wanted me to get clearance from a pulmonary specialist, to make sure my asthma wouldn't be a problem during surgery (it won't be). I was referred to Dr. S, who, it turned out, was the same pulmonary specialist that I saw a few months before my diagnosis. A few months before that, I had pneumonia, and was still having some breathing issues. He did a CT scan, and saw a swollen node and a cloudy patch on my lung. He said one of them was about a 5% chance of cancer, and the other only about 10%. That was really the beginning of my cancer journey. So, that was nice to see him again, I guess....
Recovery for this surgery is going to be slooooooow. Six weeks in a sling, for starters. So, as much as I've slowed down with posts in the last couple of months, you can probably expect it so get even a little bit slower. But it won't stop completely -- I have a few articles in reserve that I hope to write about soon, and I'll certainly keep reading whatever new Follicular Lymphoma information I can find. And of course, I'll try to provide some shoulder updates when I can. I got myself some nice voice recognition software, and I've been practicing with it over the last couple of weeks. So the blog will certainly continue.
Wish me luck, everyone. See you soon.
Thursday, February 27, 2014
Monday, February 24, 2014
What to Know After a Lymphoma Diagnosis
Yesterday, the Chicago Blood Cancer Foundation posted a video of their TV show, Battling and Beating Cancer. It's a special Valentine's Day episode, though it's less about cuddling with your honey and more about understanding what to do after a diagnosis. It's called "The importance of obtaining a second opinion when diagnosed with cancer."
I've posted something from the hosts, Scott Seaman and Charlene McMann, before. They do some good stuff (though I recall disagreeing with the way they presented things in the past).
Not too many disagreements here: the bulk of the 27 minute video is an interview that Scott does with Jean Ridgewood, a nurse practitioner in Hematology at the University of Chicago hospital. While the title focuses on second opinions, the interviews get into a bunch of issues that a new patient should think about: getting second and third opinions, understanding the side effects of chemo, understanding blood counts, communicating with your doctor, staying healthy during treatment, scanxiety, and being aware of how reliable the info is that you are getting from cancer bloggers. (Always ask your oncologist if you have questions. Good gravy -- don't take what I say as the final word about things. I'm no doctor.)
(**OK, my one slight disagreement: there's a real focus in the video on traditional chemotherapy and dealing with its effects. If this is geared toward new patients, maybe mention some non-chemo treatments? At least a nod toward them? The "side effects" discussion assumes a pretty traditional type of chemo, it would seem. But, hey -- one video can't do it all, so it's pretty minor.)
And one really nice thing that Scott says in introducing Nurse Ridgewood: remember how important nurses are. As much as we need to value and trust our doctors, it's the nurses who end up spending the most time with us, especially during treatment. Nurses are the best. I have yet to meet a bad oncology nurse; they need to be special people to take that on, I think.
All that said, I have great admiration for Scott and Charlene, who created the Foundation after Scott's NHL diagnosis. They do a lot of good, especially in the Chicago area, in making people aware of blood cancers, of advocating for patients, and in encouraging research. Bravo to you both.
I've posted something from the hosts, Scott Seaman and Charlene McMann, before. They do some good stuff (though I recall disagreeing with the way they presented things in the past).
Not too many disagreements here: the bulk of the 27 minute video is an interview that Scott does with Jean Ridgewood, a nurse practitioner in Hematology at the University of Chicago hospital. While the title focuses on second opinions, the interviews get into a bunch of issues that a new patient should think about: getting second and third opinions, understanding the side effects of chemo, understanding blood counts, communicating with your doctor, staying healthy during treatment, scanxiety, and being aware of how reliable the info is that you are getting from cancer bloggers. (Always ask your oncologist if you have questions. Good gravy -- don't take what I say as the final word about things. I'm no doctor.)
(**OK, my one slight disagreement: there's a real focus in the video on traditional chemotherapy and dealing with its effects. If this is geared toward new patients, maybe mention some non-chemo treatments? At least a nod toward them? The "side effects" discussion assumes a pretty traditional type of chemo, it would seem. But, hey -- one video can't do it all, so it's pretty minor.)
And one really nice thing that Scott says in introducing Nurse Ridgewood: remember how important nurses are. As much as we need to value and trust our doctors, it's the nurses who end up spending the most time with us, especially during treatment. Nurses are the best. I have yet to meet a bad oncology nurse; they need to be special people to take that on, I think.
All that said, I have great admiration for Scott and Charlene, who created the Foundation after Scott's NHL diagnosis. They do a lot of good, especially in the Chicago area, in making people aware of blood cancers, of advocating for patients, and in encouraging research. Bravo to you both.
Friday, February 21, 2014
Patient Power on Indolent Lymphomas
Patient Power has another video related to indolent lymphomas. It's a follow-up to the ASH conference (which the video calls "the World Series" of blood disease conferences. Nice.)
The video is called "Targeted Approaches to Treating B-Cell Malignancies," and features a brief interview (a little under 7 minutes) with Dr. Leo Gordon from Northwestern Memorial Hospital. He discusses some of the treatments that have been in the news lately, like Ibrutinib, that are easy to take (pill form) and target processes that affect the survival of the cancer cells, rather than going after the cells themselves.
Dr. Gordon says he wishes he could start over right now, and see some of the research happening now coming into fruition. Given all of the great stuff happening, he thinks it is vital that more funding be provided for basic cancer research. Amen to that.
A nice video if you're looking for some hope....
The video is called "Targeted Approaches to Treating B-Cell Malignancies," and features a brief interview (a little under 7 minutes) with Dr. Leo Gordon from Northwestern Memorial Hospital. He discusses some of the treatments that have been in the news lately, like Ibrutinib, that are easy to take (pill form) and target processes that affect the survival of the cancer cells, rather than going after the cells themselves.
Dr. Gordon says he wishes he could start over right now, and see some of the research happening now coming into fruition. Given all of the great stuff happening, he thinks it is vital that more funding be provided for basic cancer research. Amen to that.
A nice video if you're looking for some hope....
Dr.
Leo Gordon, from Northwestern Memorial Hospital - See more at:
http://patientpower.info/video/targeted-approaches-to-treating-b-cell-malignancies?autoplay=1&utm-source=facebook-p2&utm_medium=email&utm_campaign=LYM-2013-0102-03&utm_content=announcement#sthash.VtvSWIHv.dpuf
Tuesday, February 18, 2014
NHL on TV
A woman in the support group gave us a link to an episode of "Healthy Body, Healthy Mind" that featured her son, a T Cell Lymphoma patient. The episode is called "Treating Non-Hodgkin's Lymphoma," and is available now online.
"Healthy Body, Healthy Mind" is PBS show, available in some local markets (though not mine). It's as 30 minute show that discusses a number of health topics.
"Treating Non-Hodgkin's Lymphoma" follows two patients and their doctors, and gives a general overview of NHL. The show divides NHL into B Cell and T Cell types, with one patient and doctor story devoted to each. The physicians are Dr. Owen O'Connor from Columbia University Medical Center, and Dr. Nathan Fowler, M.D. Anderson. Dr. O'Connor seems like a very awesome guy, very personable. They showed less of Dr. Fowler interacting with his patient, but I'm familiar with his name, and know him to be a world-class researcher.
The second half of the show focuses on treatments. While they don't get much into specifics (though O'Connor does mention R-CHOP at one point), it does give a decent, if general overview of where we are now and where we are headed. Dr. Fowler advocates for more research into "targeted, biologic" treatments, and sees them replacing chemotherapy at some point.
I understand the B Cell/T Cell way of organizing the show, though I would have liked to have seen more attention to the indolent/aggressive way of organizing things, which makes more sense to me, personally. That way of dividing NHL does get some mention, so they do acknowledge that there are lots of different subtypes, which is nice.
Overall, a good general introduction to NHL.
"Healthy Body, Healthy Mind" is PBS show, available in some local markets (though not mine). It's as 30 minute show that discusses a number of health topics.
"Treating Non-Hodgkin's Lymphoma" follows two patients and their doctors, and gives a general overview of NHL. The show divides NHL into B Cell and T Cell types, with one patient and doctor story devoted to each. The physicians are Dr. Owen O'Connor from Columbia University Medical Center, and Dr. Nathan Fowler, M.D. Anderson. Dr. O'Connor seems like a very awesome guy, very personable. They showed less of Dr. Fowler interacting with his patient, but I'm familiar with his name, and know him to be a world-class researcher.
The second half of the show focuses on treatments. While they don't get much into specifics (though O'Connor does mention R-CHOP at one point), it does give a decent, if general overview of where we are now and where we are headed. Dr. Fowler advocates for more research into "targeted, biologic" treatments, and sees them replacing chemotherapy at some point.
I understand the B Cell/T Cell way of organizing the show, though I would have liked to have seen more attention to the indolent/aggressive way of organizing things, which makes more sense to me, personally. That way of dividing NHL does get some mention, so they do acknowledge that there are lots of different subtypes, which is nice.
Overall, a good general introduction to NHL.
Saturday, February 15, 2014
PET Scans for Follicular Lymphoma
From the journal Annals of Oncology comes the study "The Prognostic Role of Post-Induction FDG-PET in Patients with Follicular Lymphoma: A Subset Analysis from the FOLL05 Trial of the Fondazione Italiana Linfomi (FIL)."
(I'm guessing that sounds much nicer in Italian: Il ruolo prognostico di post-induzione FDG-PET in pazienti con linfoma follicolare: un sottoinsieme di analisi dalla prova FOLL05 della Fondazione Italiana Linfomi (FIL). Say it slowly, while holding a glass of chianti and wiggling one eyebrow seductively. It is much nicer, isn't it?)
The study focused on the value of PET scans, compared to CT scans, in determining if a patient who had been treated was getting worse. This study is part of a larger Italian study of Follicular Lymphoma that has been looking at the effectiveness of Rituxan + CHOP, CVP, or FM. The researchers looked at 202 patients who had been given a PET scans three months after they were finished with their first treatment.
They found that the PET scans did a much better job then the CT scans. 15% (22 out of 145) of patients with a complete response (CR) after their CT scan were found to actually have only a partial response (PR) after the PET. On the other side, 53% (30 out of 57) of patients that were deemed PR after the CT scan were considered CR after the PET.
They then followed up with those patients for almost 3 years, and found that 66% of those who had been labeled as having a CR did not have their lymphoma return, while only 35% of those with a PR managed to keep their lymphoma from progressing. Thus, PET scans can be seen a prognostic tool -- a way of predicting whether or not it will progress over time. The authors recommend that PET scans become a required part of determining whether or not a patient has responded to treatment.
Interesting results, and it will be interesting to see how the lymphoma community responds. The CT vs. PET question has been thrown around for quite some time; both types of imaging have their limitations, and there are cost/benefit arguments that have to take place, too. (See Lymphomation.org for their (as usual) excellent discussion of PETs.]
Maybe we're leaning toward PET scans being worth it? ASH also featured a presentation this year on the benefits of PETs for Follicular Lymphoma after first-line Rituxan-containing treatments. It was similar to this Italian study in some ways, though not completely parallel. Still, the results also came down in favor of using PET scans as a prognostic tool. Maybe the two studies together will make a difference.
It's hard for me to get too emotionally invested in using PET vs CT. My own oncologist has favored CT scans, and while I haven't had a scan in a few years, the CT seemed to work just fine. But the numbers certainly favor taking a harder look at the value of PETs for Follicular Lymphoma.
Wednesday, February 12, 2014
Shirley Temple: Cancer Heroine
As you may have heard, Shirley Temple Black died yesterday. Lots of nice tributes to her all over the internet, and they were certainly well-deserved. She brought a lot of joy to people at a time when they needed someone to bring them joy. I heard someone on the radio say that she brought optimism and hope to the world -- certainly something I could get behind.
I've seen and heard much less, though, about her role as a cancer heroine. I've looked at a few more longer articles about her life, and that small bit is kind of buried. Granted, she lived an eventful life as an actor, activist, and diplomat, but I think it's worth highlighting what she did for women with breats cancer -- and for cancer patients in general.
She was beginning her diplomatic career in the early 1970s when she was diagnosed with breast cancer, and had a mastectomy. At a time when cancer wasn't talked about much -- and breast cancer certainly wasn't talked about -- Temple Black held a press conference in her hospital room after the operation. Here's a copy of a newspaper story, complete with her picture. As the story points out, she was quoted as saying, "It is my fervent hope that women will not be afraid to go to their doctors for diagnosis when they have unusual symptoms. There is almost certain recovery from this form of cancer if it is caught early enough."
Betty Ford is often credited with being one of the women who came forward and talked publicly about her breast cancer, helping to remove the stigma. Shirley Temple Black did it two years earlier.
That makes them both heroines. The stigma didn't go away overnight. Cancer was something whispered about for a long time, and breast cancer even more so, given our culture's complicated view of the breast as nurturing but sexual. Getting women to talk about potential problems was a major victory. We're seeing the effects of that today.
Of course, I'm in favor of any attempt to make people more aware of cancer. I think it's important for people in a personal way to talk about their cancer, to not hide their fears, to communicate with others about their needs, to let doctors know what's going on. I know this from experience. But it's also important to talk about cancer because we don't ever want that stigma to return. If cancer becomes a shameful thing, then none of that personal talk will ever happen.
So celebrate Shirley Temple Black's extraordinary life -- as an actor, dancer, singer, activist, diplomat, and wonderful person. But be sure to add Cancer Heroine to that list.
I've seen and heard much less, though, about her role as a cancer heroine. I've looked at a few more longer articles about her life, and that small bit is kind of buried. Granted, she lived an eventful life as an actor, activist, and diplomat, but I think it's worth highlighting what she did for women with breats cancer -- and for cancer patients in general.
She was beginning her diplomatic career in the early 1970s when she was diagnosed with breast cancer, and had a mastectomy. At a time when cancer wasn't talked about much -- and breast cancer certainly wasn't talked about -- Temple Black held a press conference in her hospital room after the operation. Here's a copy of a newspaper story, complete with her picture. As the story points out, she was quoted as saying, "It is my fervent hope that women will not be afraid to go to their doctors for diagnosis when they have unusual symptoms. There is almost certain recovery from this form of cancer if it is caught early enough."
Betty Ford is often credited with being one of the women who came forward and talked publicly about her breast cancer, helping to remove the stigma. Shirley Temple Black did it two years earlier.
That makes them both heroines. The stigma didn't go away overnight. Cancer was something whispered about for a long time, and breast cancer even more so, given our culture's complicated view of the breast as nurturing but sexual. Getting women to talk about potential problems was a major victory. We're seeing the effects of that today.
Of course, I'm in favor of any attempt to make people more aware of cancer. I think it's important for people in a personal way to talk about their cancer, to not hide their fears, to communicate with others about their needs, to let doctors know what's going on. I know this from experience. But it's also important to talk about cancer because we don't ever want that stigma to return. If cancer becomes a shameful thing, then none of that personal talk will ever happen.
So celebrate Shirley Temple Black's extraordinary life -- as an actor, dancer, singer, activist, diplomat, and wonderful person. But be sure to add Cancer Heroine to that list.
Monday, February 10, 2014
End is Near for Bexxar
This is almost two weeks old, but Jamie Reno published a nice piece for the International Business Times on the demise of Bexxar, the RadioImmunoTherapy treatment that will be discontinued by GlaxoSmithKline on February 20.
Reno focuses on the issue of profits vs. people. Bexxar has proven to be very effective, especially over the long-term (and Reno is himself an example of that), but is more difficult to administer than Rituxan or traditional chemo. As a result, despite its good track record, Bexxar hasn't been used as much as other treatments. So GSK is giving up on it (rather than, say, selling it to another company who might put more effort into marketing it). It means another option is gone for Follicular Lymphoma patients. Profits weren't there, so people suffer.
Read the article. Reno does a nice job of laying out the issues. (That's why he's a Lymphoma Rock Star.)
I get the feeling that, despite their successes, RIT is on its way out -- Zevalin and another being developed. Particularly with newer Kinase inhibitors, anti-PD1s, and vaccines being developed, something as complicated (or perceived to be complicated) probably isn't going to be pushed up the preference list. If we're lucky, Zevalin will at least stick around, so the option will be there if we need it.
That's a little pessimistic, I know, but we still have lots of options, with more on the way.
(And I'm going to have to stop there. Stiff shoulder. Maybe that's contributing to my pessimism?)
Reno focuses on the issue of profits vs. people. Bexxar has proven to be very effective, especially over the long-term (and Reno is himself an example of that), but is more difficult to administer than Rituxan or traditional chemo. As a result, despite its good track record, Bexxar hasn't been used as much as other treatments. So GSK is giving up on it (rather than, say, selling it to another company who might put more effort into marketing it). It means another option is gone for Follicular Lymphoma patients. Profits weren't there, so people suffer.
Read the article. Reno does a nice job of laying out the issues. (That's why he's a Lymphoma Rock Star.)
I get the feeling that, despite their successes, RIT is on its way out -- Zevalin and another being developed. Particularly with newer Kinase inhibitors, anti-PD1s, and vaccines being developed, something as complicated (or perceived to be complicated) probably isn't going to be pushed up the preference list. If we're lucky, Zevalin will at least stick around, so the option will be there if we need it.
That's a little pessimistic, I know, but we still have lots of options, with more on the way.
(And I'm going to have to stop there. Stiff shoulder. Maybe that's contributing to my pessimism?)
Friday, February 7, 2014
"I Wish I Had Breast Cancer"
I saw this article a few days ago on Salon.com: "I Wish I Had Breast Cancer." It's written by Mary Elizabeth Williams. (I've linked to her before; I think she's one of the best writers on cancer out there -- particularly about the experience of being a cancer patient, since she herself has stage 4 melanoma, and is doing great in an immunotherapy trial.)
Williams isn't wishing that she had breast cancer; she's reporting on a British video campaign on pancreatic cancer. It shows some grim statistics about survival rates for pancreatic cancer, and features two people who were just diagnosed. The man says he wished he had testicular cancer instead. The woman wishes for breast cancer.
It's kind of an odd campaign, though I can understand its logic: if you have to get a cancer diagnosis, and you had a choice, who wouldn't want a cancer with better survival odds?
Of course, we don't get that choice.
And I've already written plenty about the whole "If you have to have cancer, this is a good one to get" thing. There are no good cancers. I'm not sure there are really any better cancers.
I certainly feel fortunate to have spent six years since diagnosis in a relatively healthy state, with only one round of a fairly tolerable treatment. But my case certainly isn't typical for NHL, or even for Follicular Lymphoma. It comes in different shades of aggressive, of course. Some of my fellow FLers aren't so fortunate.
And I cannot discount the emotional and psychological costs of having Follicular Lymphoma. Transformation is always a fear. There are days when that issue kind of clouds over me, and I feel like time-bomb. That's not fun. Sometimes I need to remind myself not to get too cocky.
Would I trade cancers with someone? I don't think so. Even a cancer that is curable, with a high rate of success, isn't completely curable. Everyone lives with that same fear, waiting for that magical 5 year mark. Everyone deals with the short-term effects of treatment, and the long-term fears of whether the treatment is worse than the disease. I wouldn't make that trade. Certainly not now. At least I know what I'm dealing with at the moment.
Williams brings up the larger point: we really shouldn't be competing with one another for which cancer is best or worst, and that's really what this campaign does. Obviously, an organization devoted to pancreatic cancer awareness is going to do its best to raise awareness (and maybe research funding) for its own cause. They wouldn't be doing their job if they weren't. But the message seems to be based on essentially saying "those other cancers aren't so bad as ours, so feel blessed if you get one of them instead of this one." That's just not right.
I always try to look for the best when it comes to all things cancer-related. So maybe the best outcome here really is that we have more conversations about cancer, its early detection, its treatment, and especially its research funding.
And those conversation ultimately remind us that we're all in this together.
Williams isn't wishing that she had breast cancer; she's reporting on a British video campaign on pancreatic cancer. It shows some grim statistics about survival rates for pancreatic cancer, and features two people who were just diagnosed. The man says he wished he had testicular cancer instead. The woman wishes for breast cancer.
It's kind of an odd campaign, though I can understand its logic: if you have to get a cancer diagnosis, and you had a choice, who wouldn't want a cancer with better survival odds?
Of course, we don't get that choice.
And I've already written plenty about the whole "If you have to have cancer, this is a good one to get" thing. There are no good cancers. I'm not sure there are really any better cancers.
I certainly feel fortunate to have spent six years since diagnosis in a relatively healthy state, with only one round of a fairly tolerable treatment. But my case certainly isn't typical for NHL, or even for Follicular Lymphoma. It comes in different shades of aggressive, of course. Some of my fellow FLers aren't so fortunate.
And I cannot discount the emotional and psychological costs of having Follicular Lymphoma. Transformation is always a fear. There are days when that issue kind of clouds over me, and I feel like time-bomb. That's not fun. Sometimes I need to remind myself not to get too cocky.
Would I trade cancers with someone? I don't think so. Even a cancer that is curable, with a high rate of success, isn't completely curable. Everyone lives with that same fear, waiting for that magical 5 year mark. Everyone deals with the short-term effects of treatment, and the long-term fears of whether the treatment is worse than the disease. I wouldn't make that trade. Certainly not now. At least I know what I'm dealing with at the moment.
Williams brings up the larger point: we really shouldn't be competing with one another for which cancer is best or worst, and that's really what this campaign does. Obviously, an organization devoted to pancreatic cancer awareness is going to do its best to raise awareness (and maybe research funding) for its own cause. They wouldn't be doing their job if they weren't. But the message seems to be based on essentially saying "those other cancers aren't so bad as ours, so feel blessed if you get one of them instead of this one." That's just not right.
I always try to look for the best when it comes to all things cancer-related. So maybe the best outcome here really is that we have more conversations about cancer, its early detection, its treatment, and especially its research funding.
And those conversation ultimately remind us that we're all in this together.
Tuesday, February 4, 2014
World Cancer Day!
Happy World Cancer Day, everyone!
I had big plans to celebrate our special day by making soup, since it's about 18 degrees out and we are in between snow storms. It was going to be quite the soup, too: a spicy tomato base with crab (to represent cancer, like the zodiac sign). Then I thought maybe I'd do something to represent lymph nodes. Corn? Pearl couscous? But then it started to seem yucky and I lost my appetite. Maybe I'll make cupcakes instead. (Without the lymph nodes.)
Anyway, it's World Cancer Day, sponsored by the Union for International Cancer Control. This year, their focus is on dispelling myths about cancer. Their 4 big myths:
1) We don't need to talk about cancer
2) Cancer: There are no signs or symptoms
3) There is nothing I can do about cancer
4) I don't have the right to cancer care
You don't have to read much of this blog to know that I'm down with dispelling these four myths.
I also fully believe in celebrating cancer. Partly because it gives us a chance to talk, but also because it reminds us that we're still here and fighting.
Celebrate not just the day, but all the days up to this one.
I had big plans to celebrate our special day by making soup, since it's about 18 degrees out and we are in between snow storms. It was going to be quite the soup, too: a spicy tomato base with crab (to represent cancer, like the zodiac sign). Then I thought maybe I'd do something to represent lymph nodes. Corn? Pearl couscous? But then it started to seem yucky and I lost my appetite. Maybe I'll make cupcakes instead. (Without the lymph nodes.)
Anyway, it's World Cancer Day, sponsored by the Union for International Cancer Control. This year, their focus is on dispelling myths about cancer. Their 4 big myths:
1) We don't need to talk about cancer
2) Cancer: There are no signs or symptoms
3) There is nothing I can do about cancer
4) I don't have the right to cancer care
You don't have to read much of this blog to know that I'm down with dispelling these four myths.
I also fully believe in celebrating cancer. Partly because it gives us a chance to talk, but also because it reminds us that we're still here and fighting.
Celebrate not just the day, but all the days up to this one.