marym

Thanks to all who offered their prayers and good wishes. My MRI results were great. I have no new mets and those I had seem to be smaller except for one. Treated mets have no edema, so I can wean myself from the decadron (I'm at 2 mg/day). The doctors will discuss whether to use radio surgery on two of the mets, one because it may be a little larger and is in the cerebellum and the second one because it is near the vision center, (eyes were just checked in Dec and had no change). Or they may just may wait for another 3 months and see what the next MRI presents. Mary

I thonk work is useful during this time. I am really glad that I can work and it's part time. But you need to be sure that you are not exposing yourself to germs that could be dangerous. I would check with my doctor and be sure my white counts are high enough to work. Good luck. Mary

I think the ct is most valuable since the chemo is really treating the primary cancer, so we see the results. I think PET scans are not exact - (arthritis, and other normal activity lights up - and it doesn't show size ). I feel if the lung tumor is under control, then new tumors shouldn't be spinning off to places far and away. If I have pain or problems elsewher, then my doctor will order additional test, but he also stays with CTs and MRIs. Maey

I do not know all the qualifications required for the cyberknife, but with radiosurgery they do want no more that 4 or 5 mets. I'm surprised the WBR didn't help more. I would suggest that even if all mets cannot be treated, they treat on an as needed basis - if it's thecerebellum, get it out! I think I would want to see another doctor to look at alternatives for dealing with your friend's situation. Good luck. Mary

When I was first diagnosed, I had a CT of chest, abdomen, and MRI of spine and brain, as well as a bone scan. Then I relocated to Fl and went to Moffitt and had Pet Scan and chest ct. Because my original brain MRI showed mets, I had a follow up and radio surgey. Since then , I have an brain MRI every 3 months (tomorrow is my next one). And I have had 2 brain Pet Scans. These have mostly nbeen to assess the rdaio surgery results. I have also had a couple of spine MRIs but these were due to pain and preceeded radiation. And of course every 2 moths or so, I have a chest CT to see results of current treatment. If a brain MRI hasn't been done, I would request one. If you had one and are clear, then annually would seem reasonable, unless you have symptoms that would warrant testing. Mary

HI, No pain after my port was placed. I was black and blue and you can't lift anything for a week or so. But I don't recall any pain at all. Mary

Chemo can be tough on the kidneys - any drug can be. The doctor will be watching this - it's checked before each chemo session. Mary

Prayers for you and your Mom. Mary

I'm sorry to hear of your experience and offer my prayers. Mary

You need to get the CT to help determine what the density is - it can be a number of things - even a benign tumor. I'll say a prayer for good results. Mary

I got a very bad rash when I was on Taxotere. It was only on my ears - but itched so badly. I would actually boil water and burn my ears to stop the itching. Finally, I saw a dermatologist who provided a compond that cured the problem. Rahes do frequently occur with chemo. Decadron generally supresses the rash. Mary

Hi, The first two or three days are usually better because you have the effects of the decadron which counters some of the chemo response. I was also on the same chemo and dod not experience the problems you indicate. Once or twice, I took anti-nausea medicine, but that's all. Hopefully, the doctors will determine what the problem is and be able to treat it. Best wishes. Mary

Hi, Like many others, I am intrigued by what has set you off. Please let us know. If it's an article of dubious content, tell us. Having said that, I think there is often information here that may not be accurate - but let's consider what this board really is. For the most part, it is anecdotal information about individual's responses,experiences and feelings. We should all use it as just that. It is another datapoint in helping us make a decision. One way it is very useful is simply to help us know what questions to ask out doctors. The board has presented to me ideas that allowed me to have a better understanding of my disease. First the information here, then a discussion with my doctor or nurse. Anyway, I do appreciate your comments are in an effort to ensure accuracy in whats presented, so I thank you for that. I guess beyond that I say, we all need to be discerning as we go through the information presented here. Mary

Hi Mary Coleen, I'm sorry to hear that your husband is having some difficulty. The chemo can have acumulative effect. I assume his RBC was okay, since you say he received nuepogen. I know I needed arenesp almost every month - I was anemic most of my initial chemo (which was gemcitibine and carboplatin for 11 cycles). Is he having any problem with fluid retention? That can also cause SOB. I think his operation and a fairly strong chemo regime could account for the problems, but I would want to review with the doctor, just to be sure. Sleeping a lot is good - and other than that, get him to drink enough fluids and hopefully eat a few small meals. Hope he feels better. Mary

Wewlcome to the site, Alie, I'm so sorry that you had need to find us. I think the best support I get from my family is just being there. Early on, they let me be sad and cry when I needed to and now they just assist me as needed. They often come to appointments with me and when I'm tired or not feeling great, they'll take care of shopping, dinner or whatever. But mostly they are with me and we try to enjoy every day. You also need to go through that grieving and the anger and get to the place where we're ready to fight. I was originally diagnosed with 6 to 12 month. Its been 21 months and I still go about my normal business, work part time and have not been hospitalized or even in bed for a day of tnhe time. So the disease can be treated - if not cured (yet). By the wasy, those who have been operated on can tell you this surgery is major and has a long recovery time - I'm not sure I would have the surgery if it were possible for me. Best of luck to you and your Mom. Let us know how things work out. Mary

Hi, I was on Alimta and found it to be an easy chemo. The only side effect I had was fatigue. Unfortunately, Alimta did not work for me, but it has been good for a number of people on the board. By the way, I have been on morphine sulfate (MS-Contin) since I was diagnosed. I take 30 mg twice a day and I'm pain free. And once you are oon a regular dosage for pain, it's not like you are "drugged". You are just normal. If your Dad's pain medicationis not fully effective, request an alternative until you find one that will keep him pain free. Best wishes. Mary

Aaron, The two most often reported side effects - with a very high percentage of patients experiencing are diahrea and rash. I have been on Tarceva for 6 weeks and have a mild rash. On my face it manifests as very tiny pimples which cannot be seen except close up. The skin feels very dry. On my back, and behind my knees is another rash with slightly larger pimple like marks. These tend to itch a little and be sore a little. Neither itch nor soreness are a problem for me. I have also had no problem with diahrea. So for me Tarceva has been a piece of cake. In fact I feel great. I won't know for another month if the drug is effective, but I sure hope so. The only difficulty I have had at all is that my nails are very sensitive - sides of fingers and toes. I just use rubber gloves in water and sometimes wear cotton gloves around the house. Friends have been calling me wacko - as in the gloved Michael Jackson. Some people have been on Tarceva for a year or more. If I could feel like a do now for another year..... I hope you have success with it and that the side effects are not too bad. Most people seem to think the side effects can be managed. In Mexico, make sure you stay out of the sun! But have agreat time! Mary

So glad the chemo and radiation aren't too much for your Mom. They can make you quite tired, so extra rest is called for. Hope things continue looking good for her. Mary

Radiation should be getting rid if the tumor. If there are mets that are not causing pain, they will not radiate. I have several mets that as of now are not causing pain. If and when they do, I will have radiation to destroy the tumor. The problem is this causes problrms with the bone. I have 2 fractures in my spine from where I was radiated. Again, since there is no pain, only Zometa is being used for treatment. Why chemo would be stopped is bewildering. It is clearly working on the primary tumor. And the primary tumor is what sends off the little annoying cells that become mets. So chemo would seem to be desireable. Have you talked with another doctor for a second opinion? Mary

I am so sorry for your loss. May your mother find peace and joy. And your family remember all the wonderful times together. Mary

Barbara, I would like others recommend a cancer center. There are many excellent oncologist outside of cancer centers, but many hospitals rely on cancer centers for ther knowledge. (head of surgery in ny hospital uses MB Anderson for tumor board presentation and recommendations). So if avauilable, go to the source. As far as what should or should not be or have been done - we learn so much as we proceed. Just the state of medicine practiced in treatment of LC has changed in the 20 months since I was diagnosed. So it's no use beating anyone up. And your energy is needed for the next fight. I'm so sorry that you have to go through all this again, I remember all the emotions my diagnosis brought forth ..but you get past it. If you are not already there, get yourself an antidepressant. I was given lexapro early on and it has been really helpful. Hang in there. Mary

Hi, My only radiation was for bone and brain mets, none for the primary tumor. Radiation makes you extremely tired and I have found that after the radiation is completed, you get a second hit of fatigue - some time between 2 and 6 months later. I did have taxotere as a chemo , single agent and I had carboplatin in combination with gemcitibine. I found the taxotere to cause fatigue. I have to imagine after that much radiation and add the chemo, your husband should be very tired. As far as pain, if he wasn't experiencing painbefore the radiation, I'm not sure why he would be now. I would ask the doctor. Since my radiationwas given solely due to the pain I was experiencing, it did get a little worse befor it was better. I did not have any experience with pain from the chemos I have been on, except for so achiness. At any rate the doctor should be able to provide relief. And his blood counts will tell you if he needs a boost to his red blood. I frequently received Aeanesp for anemia. Best wishes. Mary

Glad the treatment is being tolerated reasonably well, I have found that a part of the new normal (after cancer) extra sleep is just a requirement. With radiation, it's even more necessary. And please take some time off from work. Much too high a risk of germs. When I was really low, I tried to stay home or go someplace when they first opened, do my business and then leave. I no longer shake hands or hugs and kisses to the family. We throw kisses and do air hugs! They know I still love them - but I take no chances. Mary

Welcome. Sorry you had a need for our site, but I hope we can be of hlep. Sounds like things are going well so far for your Dad. May it continue. Let us know. Best wishes. Mary

Hi Lisbeth, I am so sorryfor the diagnosis - and I never believe there is no hope. Being realistic is good - lung cancer cannot be cured. Many however live for years after diagnosis. There are some stories here with SCLC showing NED, so take note. I have NSCLC, but was told 6 mo to maybe a year. That was 21 months ago and I atill live anormal life, work part time,etc. I just visit the doctor more frequently and need more rest. 90% or more of the time I feel so well, it's hard to believe I have cancer. So, please have the doctor explain options for treatment. If he doesn't want to, look look for a second opinion. But most of all, try to make the verybest of any time - remembering all the good times and making new good times. Best wishes. Mary