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Medical Forum / Diseases and Disorders / Cancer / April 2004still here...
Hi group: Hi J, Hi Steph: Just dropping in to report that we are still kicking. Mother in law is still partially ambulatory, but with much effort. Had to visit hospital for head pain, was given dilaudin <sp?>. Not good sign. The lack of logic is maddening. If anyone out there has cancer and is reading this... please, please, please try your best to (a) let your family do things to help you and (b) try to make sense, and if you realize you can't make sense, appoint someone to make sense for you. I think that there is a control issue, where our patient can't control the cancer and what it is doing to her, but she can control some things around her. Also - if any of you know where to get a telephone memory dialer with big buttons, we can use one. J: Remember the big list of stuff I had to deal with? I think my dog has another couple of weeks. Gave a serious scare this week, fell off about 5 stairs, just laid there. Eventually she got up and now seems almost ok. Grandma had an A-Fib heart attack the other day. Mom is awaiting biopsy results from still another area, dad has to have something removed from his throat, I'm told a 4 hour surgery. My wife has to go in for a look-see at some "abnormal tissue". Oh, I have Jury Duty Monday, too. I actually look forward to Jury Duty, all but the insane "security" requirements. Our government itself is doing more work to forward the cause of terrorism than Osama Bin Laden. I wish those jackasses in washington would read the freaking constitution and bill of rights once in a while. Tired. Exhausted, more like it. Speaking silly. Tomorrow we have the suprise "almost 60" party for the mother in law. Should be interesting. Since I've been away for a little while, I bought a car. Sheesh. I'm not pleased. First time buying a certain brand and I think the dealership should be levelled and the name never spoken again... But that is a topic for another forum. I will mention that a Pontiac Vibe is a good car to look at for cancer patient ingress egress issues because the seat height is pretty close to standing butt height. G'nite. > Hi group: > [quoted text clipped - 44 lines] > > G'nite. I would try our phone company's store, RadioShack, places that cater to the blind or seniors. or "adis" in the phone book. http://www.dimenet.com/painfo/db/cgi/extractrecs.cgi?db,EQUIP_DAILY_LIVING there's one mentioned there but no description. There's a brain and/or condition which affects (some) dogs. (I forget the name, but my friend's other dog has had it for 3 years now). She's been giving the dog cortisone and phenobarbitol. And when the dog started falling over (or off stairs), she blocked the inside stairs with baby gates and husband built a ramp so the dog could lean on its railing to get outdoors. There's a tip. Start hammering a railing. She trained the dog to follow the ramp and lean on the railing, by luring it outside with bits of food. At last word, the dog has again recovered and is able to go with owners for long walks, although its head is slightly keeling to one side.. This is not advice, because I'm not a vet. Best wishes with the party, if you're still "corporeal" (ie functioning) by then. And thanks for taking the time to update us, Ron. J Finally, the news we knew was coming. Our patient had a dr. visit, and was advised to begin radiotherapy within 2 weeks. Steroids quadrupled. Now she needs to decide on taking radiotherapy. I suppose I need to get my facts straight. I seem to recall that there is a significant chance of some random stroke symptom associated with whole brain radiation, but I don't recall the probabilities. If you know of a good reference site, I wouldn't mind a reminder. Otherwise I'll go search for info. I'm sure I had it once. Might even still have a copy here on the machine. I don't really care what she decides, I'll support it. I think it doesn't really matter - it is just a question of quality and quantity, and only the patient can make that judgement call. As a means of support and to aid in informed consent, I'm hoping to provide a "decision matrix". Basically a chart that goes: If you choose to do radiation therapy: worst case probably will happen best case %chance %chance %chance If you choose no radiation therapy: worst case probably will happen best case %chance %chance %chance Since she went into the hospital within a week of my first-order-second-degree growth projection, and using some of the resources at my disposal, I would estimate about 6 weeks of "ok time" as "probably will happen" with a 50% probability if no radiotherapy. I would put 25% chance each of "more" and "less" for the best / worst cases. I dont really know what to list for the radiation therapy outcomes --- I presume that instant alzheimer's is a "worst case", but it really might not be all that bad for the patient. I mean, if "nobody's home", is there suffering? This is a very touchy subject. Maybe I'll just make up the decision matrix form and leave it all blank so she can have the radiation oncologist help fill it out. Honestly, I don't even know if she has the attention span and focus required to make sense of this decision. Think of a 5 year old with ADD who is terrified and distraught and very very sleepy... then try to get them to make a life and death decision. To all who read this: Please make a very clear advance directive and let your loved ones know your wishes while you still have the ability to communicate. Our patient's advance directive requests any and all heroic measures except if determined to be vegetative... this means that we HAVE TO submit her for radiotherapy if she cannot express herself, as it will almost certainly extend her life and she will not likely be vegetative. Might not be able to see, or might not be her personality any longer, but... So, think very carefully what you place in your advance directives. Rambling, ain't I? Sorry. I have to go. Fibro is acting up. More later, R >Best wishes with the party, if you're still "corporeal" (ie functioning) > Finally, the news we knew was coming. > [quoted text clipped - 25 lines] > worst case probably will happen best case > %chance %chance %chance 1 Whole brain radiotherapy does not improve survival 2 Median survival for patients with brain metastases is 12-16 weeks with or without treatment 3 Radiotherapy does improve quality of life for patients with symptomatic brain mets, if they have good general function, but not if they are very sick 4 The late effects or radiotherapy to the brain take many months or years to manifest, so are irrelevant for patients with limited survival. Stroke is not a side effect of radiation >1 Whole brain radiotherapy does not improve survival >2 Median survival for patients with brain metastases is 12-16 weeks with or [quoted text clipped - 5 lines] >manifest, so are irrelevant for patients with limited survival. Stroke is >not a side effect of radiation Thank you Steph. I suppose I should elaborate - this would not be for a cancer that metastasized into the brain, but for a primary occurrence of Lymphoma in the brain. (Therefore, this is "Primary CNS Lymphoma".) I know the "liquid tumor" makes certain procedures non-effective, like Gamma Knife. Some of the information I've seen indicates that there is a median post-radiotherapy survival of 10 to 18 months for this type of cancer. I think the deal is that death would occur due to increased intracranial pressure and not necessarialy due to cancer invasion directly, so I think radiotherapy actually can extend life in this case. (Median survival for PCNSL with no treatment is 3 months, which basically has already elapsed - so we are now on "borrowed" time.) So... Presuming a patient takes whole-brain radiotherapy for PCNSL and lives for about 18 months afterwards, what can you tell me? Do you know of a good web-site? I clearly understand that anything you say is not a prediction or promise, merely a recount of the experiences of others. > >1 Whole brain radiotherapy does not improve survival > >2 Median survival for patients with brain metastases is 12-16 weeks with or [quoted text clipped - 26 lines] > I clearly understand that anything you say is not a prediction or > promise, merely a recount of the experiences of others. I don't know a good website. But RT fro primary brain lymphoma is the standard treatment here in BC, sometimes with chemo. Whole brain RT is not without side-effects and risks, but not treating the lymphoma has more side-effects and risks. Here is the best write-up I've found so far: In general modern radiotherapy devices are becoming better at focusing on cancer tissue and sparing normal cells. This tends to reduce side effects. Common side effects of radiotherapy: Cystitis (pain when passing urine) - associated with bowel Diarrhea - associated with stomach and pelvis therapy Dry eye - associated with radiotherapy to to the eye Dry mouth - (xerostomia) associated with head and neck therapy Hair loss - associated with head and neck therapy Loss of taste - associated with mouth or head therapy Low blood counts (increases risk of infection) - associated with therapy that effects the bone marrow Mild depression (general) Mucositis (general) Nausea and vomiting (general) Oral pain - associated with mouth or head therapy Pain Tiredness and fatigue (general) Weight and appetite loss - associated with mouth or head therapy Short- and Long-term risks of radiotherapy The risks of any therapy must be weighed against the risks of the disease, alternative therapies, and the potential benefits of the treatment. Short-term side effects from radiation therapy may include: dry mouth loose bowel movements, mild skin reactions, sore throat, tiredness, upset stomach, Long-term side effects of radiation therapy is much lower today with newer radiation techniques that deliver low doses to the target areas, while minimizing exposures to normal tissues. Ongoing studies will better define which patients need radiation therapy and how much radiation is needed. In general, long-term risks are greater for patients who have a longer life expectancy, such as young patients receiving curative regimens. early onset of atherosclerotic heart disease; growth problems of bones and soft tissues; thyroid, heart, and lung problems; secondary cancers > Here is the best write-up I've found so far: > > In general modern radiotherapy devices are becoming better at focusing > on cancer tissue and sparing normal cells. This tends to reduce side > effects. The problem is that with brain lymphoma, the entire brain is the target, because treating just part of the brain leaves a very high incidence of recurrence in the untreated part. Modern planning techniques like IMRT (which I use a lot) are of little or no value in whole brain radiation. Having said that, the majority of the side-effects you listed are not associated with brain radiation, but with radiotherapy for head and neck cancer |
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