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Last modified on
Tue Mar 11 2008 03:05:20 PDT
How will I know if my chemotherapy is working?
Will I be able to work during chemotherapy?
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4.4 Blood counts
Diagnosis + 520 Days - Port Removal
Is all this treatment crap worth it?
Some of the things that are making your life miserable can be made a bit better. A catheter or port will make receiving the chemo less painful. Medicines can help the insomnia. Going ahead and shaving your head can replace wispy "balding" hair with a strong, manly dome (my wife thought it was very sexy!!). But, these things are not the issue, are they?
The issue is: "Is it worth it?"
My position, is absolutely clear. "Yes, it is worth it." You are not going through this hell "just to add a few years to your life." You are going through this to be CURED OF HODGKIN'S FOREVER. I don't know how old you are, but I am 37 and I endured chemo with the goal of adding, not just a few years to my life, but twenty five to forty!! Long enough to watch my stepsons have children of their own and watch my baby girl grow up, go to her senior prom, go to college, and razz me about how "out of it" her old dad is.
Never forget that, if chemo works, it ELIMINATES the cancer. There are people on the Hodgkin's Listserv who are ten and twenty years post Hodgkin's. And, even if you relapse, the goal of relapse treatment is still a cure, and it usually successful. The overall CURE rate for Hodgkin's is in the 80 percent range. For relapse cases it is still well in excess of fifty percent. I'm talking CURE, not remission. "Cure" means five years cancer free, by which point you are more likely to die of some other cause (heart attack, old age, car accident, getting hit by a meteor), than Hodgkin's.
If you are eighty-five years old, then maybe what we are talking about is "a few years." If not, however, what we are talking about is decades, the rest of a normal life. THAT is worth chemo, THAT is worth radiation, THAT is worth going through hell and back.
And, let me tell you, even after going through what I have been through, I am still willing to fight more and harder if need be. I relapse, I'm going to fight the cancer like some kind of pissed off General Patton from Hell. I'll fight it with high dose chemo, autologous BMTs, allogenic BMT, peripheral stem cell transplants, nuclear weapons, and whatever else medical science makes available to me. I'll walk over hot coals if that is what it takes to be cured. And I'll do it irrespective of the side effects and the wear and tear on my body. Screw short-term quality of life. When you're fighting for decades a few months of suffering is well worth it. -- H. Paul Honsinger <email@example.com>
protective fluoride treatments
How does chemotherapy work ?
How will I know if my chemotherapy is working?
Will I be able to work during chemotherapy?
4.3 High dose chemotherapy
BMTs and PBSCTs and Other Alphabet Soup
General Guidelines: In Hodgkin's disease, the decision to pursue bone marrow or peripheral blood stem cell transplantation is based upon many factors. It is most common in patients who relapse within the first year after completing chemotherapy, because these people have been demonstrated to have a poorer outcome to further standard therapy - their HD is considered a chemotherapy failure. This is especially true of those with "refractory" disease, meaning that it never came under control at all (i.e., didn't respond to the ABVD or whatever). For these people, transplant offers a chance for long-term survival and maybe cure. It actually doesn't have much to do with whether your bone marrow is involved with HD.
The guiding idea behind transplant is to sidestep one of the major dose-limiting toxicities of chemotherapy - the neutropenia, or occurrence of lowered neutrophil counts. If you gave a patient chemotherapy beyond a certain level, you could kill off their neutrophils and other blood cells, like red cells and platelets, to such a degree that they could not recover, and with their marrow not able to produce these cells to protect you from infection, circulate oxygen, and prevent bleeding, they would die. In transplant, you give high-powered chemo (I know, it doesn't seem anything could be higher- powered than ABVD or MOPP, but still. . . ;) ) and sometimes radiation in an attempt to "finish off" the HD or at least pull it into some control. Then you give the stem cells from the bone marrow or peripheral blood as a "rescue." This way, the person gets a "restarter" and can recover from the treatment. Unfortunately, HD can still recur, and there are some patients who die from complications; however, doctors are careful in selecting patients for transplant because they want to do what has the best chance of success with the least chance of failure. However, they aren't gods and sometimes transplant is a desperate effort in a tight situation.
There are three basic types of transplant that I'll discuss here: autologous bone marrow transplant, allogeneic bone marrow transplant, and peripheral blood stem cell transplant. The last type is usually autologous; however, allogeneic ones are occasionally performed. There is also a type called syngeneic, which is a transplant from one's identical twin, but these are fairly uncommon for obvious reasons. This type actually tends to have a higher incidence of recurrence in hematologic reasons because you get absolutely no graft versus tumor effect (see section on alloBMT, below). Still, some people undergo this and benefit from it, so don't let that scare you to death. Keep in mind that all of these transplants are stem cell transplants; it's just a question of the source. Bone marrow transplants (BMTs) are when the marrow itself is used, and peripheral blood stem cell transplants (PBSCTs) are when the peripheral blood is used.
Autologous BMT: AutoBMTs involve the use of the patient's own bone marrow. This is the most common type of BMT for HD, because HD rarely involves the marrow and with the chance of this being effective for many people it's safer than an alloBMT. Patients undergoing autoBMT often undergo much treatment before transplant, in an effort to minimize the amount of disease present at transplant. At some point the patient undergoes a bone marrow harvest. In this procedure, the person is usually anesthetized as for regular surgery, and bone marrow is drawn out in a manner similar to a bone marrow aspiration like almost all of us have had during staging workup. However, they anesthetize people for this because so much must be drawn. Afterward, the patient is sore, but that's really the most common effect. Sometimes the harvest is performed while the patient is in remission and stored for later possible use - it's cryopreserved, aka frozen! - although this is less common in HD than in acute leukemia or non-Hodgkin's lymphomas.
Before transplant, the patient undergoes a battery of workup tests, including many blood tests, a psychological evaluation, a MUGA scan to check heart function, and others depending upon that medical center's procedures and the patient's needs. About a week before the transplant, the patient is admitted to the hospital, usually to a special myelosuppression unit where special procedures are followed to minimize the risk of infection. These units often have special air circulation setups like laminar air-flow and are safer for patients with severe bone marrow suppression such as after intensive chemo and in BMT. (Some centers rarely performed outpatient autoBMTs, but that's still a bit uncommon.) If the patient doesn't already have a HICKMAN® catheter, s/he will almost always get one before transplant. The patient begins countdown to day zero, or the transplant day, so each day leading up to that is a minus (day -6, day -5, etc.). During this time, s/he receives intensive chemo with a protocol such as CBV, BEAM, or total body irradiation, although this is less common in HD because so many patients have already undergone radiation as part of their first-line or second-line treatment. It's chemo, just an inpatient version. At this early time the doctors are already watching the patient closely for any signs of infection or other problems, like fluid overload.
On day zero, the patient gets his/her marrow back. This is a bag brought in and infused through IV just like blood. If the cells have been cryopreserved, there may be a weird smell that some people describe as like garlic. It's pretty strong for that day and even a couple afterward, and it can make you pretty nauseated. It's almost a little anticlimactic, because it's just like watching blood drip in.
From this point forward, days are counted as day +1, day +2, etc. At this point, the patient usually has very low counts across the board. S/he may require many packed red blood cell and platelet transfusions. Some patients may be started on growth factor injections after a few days to help their white cells come back faster. The return of the cells - the bone marrow "taking" - is called engraftment. Usually autoBMT recipients don't have a lot of problem with graft versus host disease, since that's really related to other versus self which occurs immunosuppressive medication than an alloBMT recipient. The biggest risks during this time are treatment toxicity, such as hepatic veno-occlusive disease, and infections. Many patients develop fevers and end up on a whole run of empiric antimicrobials in addition to the prophylactic ones they're already on. As part of the pre-BMT evaluation, each patient is tested for things like CMV (cytomegalovirus) so the doctors can guesstimate who's at risk for reactivation after transplant.
Most patients are in the hospital for at least a couple of weeks post-transplant, and often longer, depending on how many infections and complications occur and how the patient is doing in terms of eating, etc. Usually the neutrophils have to reach a certain level - like an absolute neutrophil count, or ANC, of 500 - before the patient is released. The patient also has to be eating at least a little - many people end up on TPN, or nutrition-through-a-bag, during transplant and most centers say that's fine; it's better to not eat when you're really nauseated and having GI effects. After release from the hospital, the patient may have to stay nearby, often in a special hospitality house or something like that, though not always every day or every other day - at first, and gradually less as time passes. Many autoBMT patients may even be followed instead by their regular dr at home. After day +100, almost everyone - allo as well as auto - is allowed to return home (often some distance from the transplant center), most autoBMT recipients even sooner than day +100.
Varying periods of staying at home or being off work are recommended; it depends on how the patient is doing immune-wise and the center's policy. (Myself, I'd say that if you're undergoing an autoBMT and planning for less than three months off bare minimum, you may not have a realistic expectation. Six months is probably even more realistic. However, that is ENTIRELY opinion and I strongly encourage everyone to ask his/her doctor up front before BMT how long s/he should plan to be off work and sort of homebound, both if things go well and if things are extra rough. You need to go into BMT with a realistic expectation of the effects this will have on your life.)
Two really wonderful medical resources for BMT info are a couple of books - one called The BMT Data Book and one called On Call in Bone Marrow Transplantation. The first one is a companion to the 1994 Clinical Bone Marrow Transplantation by Kerry Atkinson. Both are center's library; the On Call book is only about $40 or so. Also, the American Cancer Society's excellent consumer-oriented book Informed Decisions has a section on this topic and is well worth reading; it is often available at public libraries and is, I believe, $40-50.
All of this is, of course, a broad-based response and cannot replace information from your doctor. Procedures vary from center to center and even patient to patient; these are general discussions. I am not a doctor and only guarantee that I try to provide the best information possible, not that I'm always 100% right on every single thing - it's always best to talk with your doctor for your own situation.
Actually, that was long enough that my hands are getting tired ... so I hope it's okay with everyone that I'll post the alloBMT and PBSCT over the next two to three days. -- Kimbra Wilder <Kimbra.Wilder@mcmail.vanderbilt.edu>
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For when allogeneic ("allo") would be done rather than autologous ("auto" - your own), some basic rules of thumb they look at tend to be
The general idea is that someone whose HD pops back up so quickly is probably chemo-resistant to some degree. I know that sounds crazy when the tumor in his chest has improved so wonderfully, but the basic concept is that if Mr. H can flare up again within a few months after treatment, he's just going to laugh at standard chemo.
Realistically speaking, the longer between end of treatment and relapse, the better. There is a definite survival difference between those who relapse within the first year and those who relapse afterward. Those who relapse within one year are commonly considered refractory - sounds like what they're saying about J., that Mr. H just never really went completely away at all - and are most often considered for BMT or PBSCT (a BMT, but with the stem cells coming from peripheral blood rather than the marrow directly) rather than more standard chemo. If ABVD or MOPP couldn't take care of it for more than a month or two, chances are almost 100% that it can't take care of it long-term. Trying radiation is something I'm sure they've considered - though it never hurts to ask whether they definitely have - but I suspect it's the same thing. Six cycles of ABVD should have gotten it. All that would be accomplished by giving J. more ABVD -
or MOPP - and probably by irradiating - would be
For what poor comfort it is, this is what I would want them to be talking about if I were in Jason's shoes or if that were my son. I know it seems radical - and it is definitely a major undertaking - but it is probably his best chance for knocking out the HD. -- Kimbra Wilder <Kimbra.Wilder@mcmail.vanderbilt.edu>
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Even if you look at relapsed HD in the NCI PDQ you will find a 10-20% long term survival rate with only salvage chemo.
And while a stem cell transplant is more difficult to go through, it is well worth it down the line. All this is in my personal opinion. Once again, I am not a doctor, but an Engineer. -- Alex T. (on high dose chemo while writing this)
4.4 Blood counts
Since chemotherapy and radiation attack rapidly dividing cells indiscriminately (they can't tell the cancer cells from the normal rapidly dividing cells), they hit white blood cells - especially neutrophils, which normally form the majority of your white blood cell army - very hard. (It's also why hair loss and GI side effects are common, though side effects are not necessarily indicative of how well the HD is responding - you can do well with few effects or poorly with many.) So you have many fewer neutrophils during treatment. This is like having an army with only a few soldiers - the less neutrophils you have, the less there are to go into battle with any germs encountered during the neutropenic period. So that's why you'd be anxious for their recovery - with only a few, you're much, much, much more vulnerable to infections. Germs that would give a healthy person a few days of flu-like symptoms could potentially be lethal. This doesn't mean that the common cold will kill you, etc., but that you really are at higher risk.
While you're neutropenic, it's best to wash your hands frequently with antibacterial soap, particularly after you've been outside (clinic visits, grocery store, restaurant, support group meeting, etc.) and before you eat. Avoid those with cold or flu symptoms as well as large groups of people. If you wish to go out and your dr hasn't placed restrictions on you because of low counts, instead of going out to a restaurant at five-thirty or six when it's crowded, consider going for an early dinner at four-thirty when less people will be around. Go to daytime matinees of movies instead of evening shows. (I still follow many of these myself, partly because I just like getting great seats and not feeling crowded!) Consider using the nice little antibacterial hand gels that are available now as a supplement to handwashing. If your counts are low enough, your dr may tell you to wear a germ-filter mask when you go out, though with chemo alone (rather than BMT or PBSCT) this isn't as common nowadays due to the use of growth factors - but I can remember this myself! These are just some general precautions - of course, you should *always* talk with your dr about what's best for you in terms of preventing infections. Of course, the handwashing measures are also a good idea for family/friends - the less you pick up, the less you could spread to your loved one.
A word about growth factors - there are a couple of growth factors available to help increase your neutrophil counts. These are G-CSF and GM-CSF, meaning granulocyte colony stimulating factor and granulocyte macrophage colony stimluating factor. They are usually given as subcutaneous injections - those Neupogen shots - and can be quite helpful in bringing counts up. These actually do that by "flushing out" the baby neutrophils hiding in your marrow, in reserve, and giving you more to fight with - which can sometimes jack your counts up enough to give you some really high ones. (Most places consider a total white count of more than 10-11 [10,000-11,000] to be above the normal maximum, but the growth factors often push your counts above that and it's okay.) And yes, there actually was a time not so very long ago when these weren't around and people with low enough counts had to stay in the hospital in reverse isolation or myelosuppression units hoping that they wouldn't get an infection. When I was on chemo, almost half of my treatments had to be delayed because of low neutrophil counts. Fortunately, they were never low enough to require hospitalization, though I knew enough kids who did require that to make me quite cautious about avoiding crowds and doing everything possible to avoid getting sick and to give my segs time to recover.
Growth factors are available for red cells and platelets as well - Epogen and Neumega. However, they aren't as commonly used, for various reasons. (2) As many of you probably know, those of us in treatment may show minimal signs of infection even when seriously ill. That's because those neutrophils are those responding which create the infiltrate on the fewer signs of infection. It's like a battle with less soldiers - somewhat quieter and less obvious, but definitely happening. -- Kimbra Wilder <Kimbra.Wilder@mcmail.vanderbilt.edu>
4.5 Catheters and Ports
Central line catheters
I opted against the Port-a-cath which serves the exact same purpose, but is buried under the skin (no exit site), because I did NOT want to get stuck AT ALL. No way, no how. Any one of these 3 types of catheters guarantee easy access to a vein with minimal or no pain.
There are many good reasons for a patient to choose the Port-a-cath (there are many different brands, by the way): (e.g. being around small children Port-a-caths won't get tugged; easier to disguise (especially with low-cut shirts); not susceptible to infection, as when an exit site is present; easier to deal with with someone who is sports minded; probably many other reasons. My sole reason was I didn't want to get stuck.
Generally speaking, GROSHONG® catheters are a smaller diameter, have no clip on them because there is an internal valve that responds to pressure (drawing and/or flushing through the line), and little to no maintenance is required by the patient other than keeping the exit site clean. Flushing by the patient is not usually necessary during chemo, because during the course of treatments and blood work this is done by the nursing staff. Otherwise flushing is required monthly.
HICKMAN® catheters tend to be larger diameter with a clip on each lumen to prevent backflow, or bleeding when the cap is being changed. I found this clip to be cumbersome and uncomfortable both during sleep, and trying to hide under clothing, though even this inconvenience outweighs being stuck. Daily or every-other-day flushing with saline and heparin (anticlotting agent) is required.
I recommend that the patient learn all the proper procedures for the maintenance of any type of catheter. You will come across medical personal that YOU will have to instruct! Both GROSHONG® catheters and HICKMAN® catheters are available in single, double, even triple lumens (ports).
Often, doctors or chemo nurses have the different types available to see. Trying to picture this can be a little baffling. Many patients will be willing to "show you theirs". Some patients report continual discomfort as long as the catheter is in place. This is not my experience. While I have had a total of 5 catheters over the years, I never experienced discomfort except for the first few weeks after insertion. -- Liz (Betsy) & Bob Patterson <firstname.lastname@example.org>
Diagnosis + 520 Days - Port Removal
A port-a-cath is a plastic device inserted under the skin of some cancer patients which makes the intravenous injection of chemotherapy drugs easier. As I have reported in other e-mails, ports are also useful for heroin addicts who are tired of unsightly tracks on their arms or people who like to mainline chinese food. Almost anything can go into your port - Port Advertising Slogan: "If it can go in a syringe, it can go into your blood stream!" In fact, it makes injection so easy that some of you without cancer may want to get one just to see what its like! I can arrange this for a small fee. As some of you know, I had my port-a-cath installed over a year ago and then removed last Monday in an operation which involved a very sharp knife, a skilled surgeon, lots of intravenous sedatives and my own rendition of "YMCA". This procedure went smoothly, I'm told.
Because I am married to someone who, for the purposes of this letter, I will call Mary, the installation of my port over a year ago was an important event. For all of you who have Significant Others, the location of the port is probably more important than the type of ice cream you eat as part of your cancer treatment (I had ABVD Chocolate Fudge Brownie as my chemo regimen). Question: Why is the location of the port so important and will you please get to the point or at least tell me where I can get a discount on ice cream or tell me something useful! Answer: When Mary and I "retire for the evening", I sleep on the left side of the bed and Mary puts her head on the right side of my chest. My port-a-cath was installed above my right tit (because I am a man I can call it a tit since its tiny emaciated shape is only vaguely titlike, if a woman used the word tit it would be considered vulgar). Therefore, Mary was faced (literally) with the prospect of laying her head on my chest with a piece of plastic under my skin the size and shape of a beer bottle cap (most port-a-caths are made of used beer bottle caps - little known and untrue fact). This meant that Mary could no longer lay her head on my chest unless we changed the sides of the bed we normally sleep on. Of course, doing this is as difficult as converting the Pope and can't happen under normal Earth conditions. Therefore, the only thing we felt we could do was sue our doctor, the manufacturer of the port-a-cath, the bed manufacturer, people who were eating lunch at the table next to us one evening, various former politicians and anyone else we could think of. This was ineffective but fun.
In reality, we all know now that my port-a-cath was a radio transmitter for the equivalent of the Martian Intelligence Agency (pronounced XRLFRDQZ, Acronym - ABVD, coincidence?). This is confidential information and you will be abducted repeatedly by a good looking aerobics instructor if you reveal it to anyone. Mary, being a sensible and considerate spouse, constantly complained about the location of my port beginning the day I got home from the hospital. These complaints often resulted in fights and my brandishing a
razor blade and yelling, "So take it out yourself!" I was also forced to buy extra flowers for her, even when I was vomiting. Other solutions we tried:
VUI: When having a port installed, think about how it will affect your life for the next year and make sure it is installed in a place that is convenient for your Significant Other. Mary recommends the left side of a chest other than your own, perhaps your doctor's chest?. Now that my port is gone, we can sleep soundly, if only because we know that a Martian invasion has been delayed for the foreseeable future. -- Steven Saltman <Steven_Saltman@xii.com>;
4.6 Alternative medicine
Am I better off just taking alternative medicine?
I strongly take issue with the idea that the reason "alternative treatments" are not commonly prescribed by the mainstream medical establishment is that they are not profitable to the drug companies. I believe that the free market and human nature, by their very nature, inherently tend to produce good treatments at a cost that most people can pay for with insurance.
I have several points to make.
The real reason there is no such thing as Lilamycen on the market derives from the nature of cancer. Cancer is not like a bacterial infection that might be susceptible to compounds made in nature by molds or plants. Organisms in nature have need of substances that kill bacteria or keep bacteria from reproducing because they need to resist bacterial infection themselves. It is no accident that mold produces penicillin, because without that compound, the mold would itself be digested by saprophytic bacteria.
No mold or plant, on the other hand, needs to fight off an invasion from human cancer cells. Natural selection, therefore, provides no incentive for a mutation that might produce such a compound to be selected for, passed down, and enhanced to greater effectiveness. If a naturally produced substance has a cancer-fighting effect, that would be the result of pure chance. It happens every so often, but such drugs are not effective against a broad range of cancers and usually must be used in conjunction with other, artificially synthesized, drugs.
Furthermore, bacteria are quite different from our own cells. So, one would expect there to be a wide range of compounds that would affect bacteria while leaving our own cells alone. Genetically, they are as dissimilar as an issue of Reader's Digest is from the Encyclopedia Britannica, you can tell at a glance. Cancer cells, on the other hand, ARE our own cells. Their genetic sequences are identical to those of our normal cells except for a few key base pairs. Genetically, distinguishing a cancer cell from a normal cell is like going into a warehouse full of bibles and finding the dozen or so that contain a subtle typo somewhere within. All you know is that there may be a misspelling. No drug can do that.
Instead, cancer drugs distinguish between the biochemical behavior of cancer cells and normal cells. Even that is almost impossible to do with any precision. Typically, chemo drugs attack all rapidly dividing cells. So, they get the cancer cells, but also attack our hair follicles, mouth tissues, joints, esophagi, and intestinal linings. You want to find a compound in nature that kills rapidly dividing cells but leaves healthy cells alone? Good luck!
Plus, to make it worse, not all such compounds are even absorbed by all cancers, even if the cancer cells stem from the same underlying tissue type. Hence, doctors give MOPP and ABVD for Hodgkin's, but start off with ChOPP for non-Hodgkin's lymphoma. Cells are designed not to admit through their external membranes compounds that will harm them. And, those defenses are most effective against compounds that their cellular ancestors have encountered before and may have specifically been evolved to keep them out. So, even if you find a compound that would attack the genes and cellular processes of rapidly dividing cells, there is a good chance the compound won't get past the cellular gatekeepers. In fact, those gatekeepers may, figuratively speaking of course, have pictures of the attacker in their files and have been ordered to keep it out at all costs. An artificial compound, on the other hand, does not encounter the same kind of genetic experience. It never existed before, so our bodies have not had a chance to evolve a defense to it.
Sure, there are probably some anti-cancer drugs that will in the future be derived from plants, molds, bacteria, etc., just as some have in the past. However, I am confident that, for fundamental biochemical reasons, most of the effective cancer treatments will be synthetic chemicals. And, because cancer cells are so different from one another, I doubt that there is a "magic bullet" lurking out there, either in the jungle or in the laboratory, that will cure all cancers.
If a "magic bullet" does exist, I suspect that it will come in the area of somehow training our own bodies to destroy cancer cells by a strategy like causing biochemical markers to attach themselves to cancer cells causing our white blood cells to home in on and destroy the cancers. Or, it might come from nanotechnology, where ultra-tiny, self-replicating machines are manufactured on the molecular level and individually recognize and destroy cancer cells.
The point is there is no grand conspiracy, explicit or implicit, that keeps cancer cures off the markets. Further, by the very nature of cancer, one would expect that the drugs that fight it would be comparatively expensive, complex synthetic compounds rather than naturally occurring drugs that could be easily found in nature. Therefore, there is almost certainly no grand diabolical conspiracy to prevent those natural drugs from being found and marketed. (Which is NOT to say that simple herbal formulations can not otherwise greatly improve our health and well being, even when being treated for cancer, just that such formulations are unlikely to be very effective against tumors themselves).
There ARE evil conspiracies in the world (how else does one explain the appearance of colorized Gilligan's Island reruns), but this is not one of them. -- H. Paul Honsinger <email@example.com>
NOTE: HICKMAN® and GROSHONG® are registered trademarks of C. R. Bard, Inc. and its related company, BCR, Inc.
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