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  1. Today
  2. Sad to hear this, I hope your Mom will get well soon asap. Choosing between mom and baby is the hardest thing any girl can do in her life. But you have to be strong in this case, as if you lose your emotional balance you will lose your baby too. According to me you should call Elder care people, who are ready for taking care of elderly parents at home NJ, they will be there all time with your mom to care for her.
  3. Wow, and to think my last TSH reading was 0.19. Having it re-checked soon because quite obviously, it's low. Hang in there everyone!! Ro
  4. Tomm and Charles Great on #9 done and TSH levels going south. If memory serves me correct, you, Charles and Ron H had high thyroid levels picked up later than sooner??? As Tomm has impressed upon all of us, TSH should be regularly monitored with treatments. I have TSH and Cortisol drawn every two weeks, some of my fellow infusers have them drawn every four weeks. Only when TSH is abnormal high, will T3 and T4 levels be done. TSH-Thyroid stimulating hormone is secreted from your pituitary gland. TSH stimulates the thyroid to produce T4 (Thyroxine), a thyroid hormone. When your T4 is low ( a side effect of Durvalumab) the pituitary gland senses that and increases your TSH levels to produce more T4. You may still have a high TSH level but your synthroid medication is replacing your thyroxine (T4).......just a little FYI. For me, it helps to know some of this minutiae. My fatigue seems to come and go and I can’t nail it to any particular day. Peaks and valleys so pacing myself works for me. My voice remains hoarse and I still lack pitch and volume. Been on Prilosec (for acid reflux) almost a month with no improvement in my voice. ENT referral for vocal chord evaluation not until November. I've taken it upon myself to discontinue my steroid inhaler that was prescribed for me after my pneumonitis diagnosis in May. A common side effect of inhalers are voice hoarseness and my inhaler is the only change in my regime since starting Durvalumab in January. I'm grasping at straws here but willing to eliminate the obvious. Getting #16 Durvalumab this coming Tuesday with DLCO pulmonary test. I've been pushing myself with exercise and even though I know that my lungs is not a muscle, I truly hope my pulmonary function has improved.....we shall see. Carry on. With Blessings and Gratitude, DFK
  5. Charles, I was started on 75 mcg when they saw my TSH 139 ... I checked Dr. Google to see how long it takes to start working and it said some people start to feel the effects in a week or two ... or a month or more. I choose the week option. I was very low energy for a week and then... better every day now. Hope your new higher dose gives you a speedy recovery
  6. Tomm, WOW! 113 is still way high. I couldn't plan on getting behind the wheel of a car with my levels that high. My TSH has come down to 40 something and getting a little closer to normal but clearly still affects my overall abilities, strength and energy levels tremendously. Just had to up the replacement hormones to 75 mcg. per day before number 11 on Tuesday and evergy has improved a little but still has a ways to go. good luck and glad to hear you are improving.
  7. Infusion #9 done yesterday with new energy update on blood work from #8 TSH was 139 and now 113 the others numbers got better too but this is the one that messed with me a lot. I started taking vothyroxine , (synthroid) and within a week I felt much better and ready to go to the Farmers Market tomorrow. Everyone NEEDS to have your thyroid checked!! Fatigue very light and no side effects that I know of.. enjoy your summer
  8. Yesterday
  9. Just saw that there was a "Clinical Trial" section here. Anyone with updates or info on KRAS in NSCLC?? (Specifically KRAS G12 D, not the G12C) thanks, Ro
  10. Tom Galli

    ROID RAGE

    Lao, Roid Rage is no picnic and it affects each of us differently. One close friend going through chemo had a Jekyll and Hyde reaction that included symptoms your friend experienced. Unfortunately, there is very little that can be done to counter these symptoms. I am thankful for my wife's care and understanding while I was raging during treatment. Here are some reflections about my time in chemotherapy that may provide some insight. Radiation fatigue is also a very normal side effect and one that cannot be addressed with medication. I'd tell his chemo nurse about roid rage. I wish I had more suggestions for you but his symptoms are par for the chemo course. Stay the course. Tom
  11. Ebaley, Welcome here and very sorry to learn of your dad's difficulties. While I've not had necrotizing pneumonia (a bacterial pneumonia), I've had several episodes of viral pneumonia one of which landed me in the hospital for a long stays in intensive care after my right lung was removed. Pneumothorax is a collapsed lung and I've had one of those. Do I understand your dad was discharged from hospital with these active conditions? Who is managing the IV antibiotics and attending to the chest tube dressing and drain? I find treatment of these complex disorders outside of a hospital setting hard to contemplate. Pneumonia is fluid inside the lung and that in combination with a collapsed lung is a very serious, life threatening condition. Getting hospital care for these problems would be my first recommendation. Stay the course. Tom
  12. Rower Michelle

    ROID RAGE

    Hello Lalo Nice to hear from you again! Your friend is so fortunate to have someone so caring to manage through this process. It’s no picnic that’s for sure. This disease can do things to people and then with the high powered meds it’s a whole new ball game. Some folks can do very well with minimal side effects. Given the significant personality change, if you haven’t already discussed it with the medical team, please consider it. Maybe the steroid dose can be altered? As for turning pink- that could be an allergic reaction, (I did turn purple on my face). Meds can be given for that. The fatigue comes with the territory, however it can be managed by scheduling mid day naps and some type of exercise, walking is best however just moving your arms in circles while sitting in a chair helps too. With all the advances in medical treatment there’s no reason for anyone to be really miserable (including care givers!) Be assertive in advocating and communicating. You can do this! Carry on. Keep us posted when you can! Michelle
  13. Last December my dad was diagnosed with stage 3 non small squamous cell carcinoma with a large tumor in his upper left lobe. After radiation and chemo , everything looked great. The tumor shrunk by 90%. He was started in immunotherapy and after only receiving 2 doses it was stopped as ct showed Mets to the bones and positive pet lymph node on the opposite lung. He received radiation to several spots including back tumor on L3 and small spot on femur. The plan next was to get 2 rounds of chemo and then we were going to seek out a suitable trial and had an intro consult at a major university near us. We all agreed he would complete radiation and chemo first before the trial meds. I believe he would be put on one of the new “ Trojan horse “ meds. Unfortunately after only 1 dose (half a round) of chemo , his course was complicated by hospitalization for several infections and neutropenia. All chemo is on hold now as he has developed necrotizing pneumonia with a pneumothorax to his left lung. At first the docs talked like it’s a bump in the road and a month of antiobiotics should clear it up. Then yesterday before he was discharged they came in and basically said the odds aren’t good for the infection to heal or the hole in his lung because the lung is so beat up from treatments and the large tumor already. Even though the cancer is basically gone from the lung , the damage is done. They sent him home with iv antiobiotics and a chest tube with follow up to both the lung docs and oncologist. We weee basically told to pray the lung can heal and infection go away , but some docs mentioned even if it does they are unsure if his lung/immune system can even handle more chemo. Yesterday I reached out to the major university oncologist and explained and asked if there are any options that maybe have less a toll on the immune system like chemo. I am still waiting for a response back. We have been told Worst case scenario - lung doesn’t heal and then cancer will likely take over if he can’t get more treatment and in time he’ll pass. I am just devastated. Everything looked like it was going so well and now he gets hit with some super pneumonia. Even a scan for the pneumonia happened to show he already had a major decrease in size of lymph nodes from just 1 chemo. Does anyone have any experience with this type of situation or necrotizing pneumonia with pneumothorax? Any info is very much appreciated. I just don’t want to sit idle and watch him go untreated and have this God awful disease just take over. Thanks
  14. By all means ask the Radiation Onc about the scans they do during the course of the radiation treatments. As Georgia noted, they are not as definitive as CT or PET scans, but the trained eye of an RAD Onc can tell the direction things are heading. Last year about this time I had started the Concurrent ChemoRadation treatments for Stage 3A NSCLC. The Chemo was once a week (on a Wednesday) and the Radiation every weekday. About once a week, the Radiation Techs would announce it was a "picture day" and that they would be scanning my lungs/chest right after the radiation treatment. The same machine is used, so your husband may not even know it is being done. Then the Radiation Onc would normally say that it appears that the radiation was having a positive effect, or that there was no change over the week, but she always noted that they would have to wait for a CT to do any diagnostic level reviews.
  15. Has the radiation oncologist shown you any scans at all during treatment? We have seen several scans (not as definitive as a CT or PET scan but still readable). Believe it was about a week ago, when he showed us a scan (was taken when radiation was done) that showed the outline of tumor when he started treatment and the outline of tumor at that point in time. It did show a definite reduction which is encouraging - the doctor was happy about that. However, the CT scan on Mon 8/19 should be a higher quality & resolution. My husband told me he quit smoking in Jan 2018 - I was so glad he did not smoke in the house at all and we got rid of all the ashtrays. As you said, it is an addiction and hard to overcome. I found later he was smoking when away from home but he did try the nicotine patches and then nicotine gum. The patches are hard for seniors - thin and frail skin. However, he finally quit for good after the diagnosis in April. I also don't smoke but am addicted to chocolate, powdered doughnuts, snickerdoodle cookies, etc., lol. He has been unable to sleep lately and will take the liquid morphine (4 ml or less) and then gets to sleep. Hope you get some answers tomorrow. Best wishes, Georgia
  16. Georgia, I was so glad to hear from you. Yes my husband has thrush very bad. We used Nystatin first and some in IV while in hospital and then two other meds at home and still using them. His thrush is starting to get better. Today I put a small piece of watermelon in his mouth to see if he could suck in the flavor and he choked and gagged for quite awhile. We go see his oncologist in the morning. He told us we had to wait 4 weeks after the last radiation treatment done before a PET SCAN could be done. Well I want one to see if any of this has shrunk any of the CANCER. I am glad your husband is getting nourishment now. I would not want a nasogastric feeding tube either. I wish for their throats to get better so they can eat and not have to depend on the tubes. It's been three weeks ago today that he stopped radiation. You were talking about the yard. I know this one quite well. I paid to have ours mowed yesterday. We only have a half acre close to the lake. Not on the lake but you can see it from our yard. My husband can't do anything but sit or lay down. He will sit on the porch with the dog and SMOKE. Yes he still SMOKES. I have never smoked so I don't know that addiction. I pray for him to stop. I will come Dr for now. Look forward to hearing from you. Our PRAYERS are with you both.
  17. Brenda, Just saw your post late last night and want to thank you so much for sharing. Hope you saw my update from last Fri 8/9 re feeding tube placed, unable to do esophageal dilation until esophagus is healed more, etc. Almost a week later now and things have improved; he is 6'2" usual weight 175-185; on 8/9 he was 137 lbs; yesterday 8/14 he was 146 lbs. A dietician made a home visit on M, 8/12 & was so helpful; explained the change in taste buds, how they have to be reprogrammed, and will return eventually. (He also has cancer, lymphoma, and had chemotherapy but no radiation [about 1 1/2 years ago]; has checkup scans, and is doing well.) When dietician looked at my husband's throat, he said he had thrush; doctor prescribed fluconazole (8 pills over 6 days) which should clear it up. Not clear if the "fungal infection" you mention is thrush or not. Does your oncology clinic have a dietician you can talk to? Husband's feeding tube is through the nose and he has met the goal of 5 cartons of nutrient (375 cal ea) daily. He does not like the tube in his nose and is motivated to eat whatever he can by mouth. I have kept a log by date with # of cartons of nutrient, food by mouth, and water intake (hydration goal is about 2 qts of water daily including tube flush water). He no longer has throat pain unless he swallows a piece of food that is too large or not chewed up enough. He has been able to eat a boiled or fried egg, thin slices of summer sausage, 3-4 pieces of canned sliced peaches & syrup, small piece of ham, small serving spaghetti meat sauce & pasta. He can also swallow water now instead of sipping through tiny straw. He found if he sucked on a hard candy 1st, left it in his mouth, he could then swallow water - now he no longer sucks on hard candy 1st. We've tried a lot of soft foods but some just don't work for him (pudding, applesauce, fruit smoothies, baby food jars of fruit, vegs, etc.). Last week he could not eat ice cream (too cold, perhaps?) but today he ate an ice cream bar. Sounds like your husband is having a much rougher time, having to have a G-tube through belly instead of nose. My husband finished radiation on 7/29 (had 30 treatments instead of the 40 for your husband). My husband finished 6 chemo treatments. I learned that both chemo and radiation can cause esophagitis but believe the radiation is the more likely cause. He also has a tumor in the upper lobe of the right lung, has inoperable NSCLC, not sure if it's III-A, B, or C - will ask at appt tomorrow. He will have a CT scan on M, 8/19 (3 wks after last radiation) and an appt with both radiation oncologist and chemo oncologist on 9/4. After that appt, we will know more about whether it has spread, any reduction, etc. The clinic we go to is 100 miles away in Spokane. I agree "cancer is horrible" and the side effects are even worse - did not understand this when our journey started. We were also told immunotherapy is next (once every 2 wks for a year) but my husband needs to be healthier before that starts. Also I want to do more research on this site first re immunotherapy and also biomarker testing (discussion for another time), so I have halfway knowledgeable questions to ask. My 1st question would be "what is the med and what are the side effects of the med used for immunotherapy?" Per Tomm's suggestion on this forum (Manuka honey may prevent or reduce esophagitis-related pain), I did buy some Manuka honey (1/2 Tbs twice a day) which my husband started on Th 8/8. Believe it is helping; it is expensive but I found some at Wal-Mart and also at the one health food store in town (live in rural area, county seat about 4-5000). When your husband is able to swallow, it could be helpful. Also the Prevention Oncology Mouth Rinse suggested by Laurel (above) may help once he is able to swallow. It helped her to ease the throat pain after radiation. He is so incredibly fatigued, no stamina, strength, energy, etc. and just hates it. He is used to doing what needs to be done around our property and now he can't. We have a large lawn to mow which he can't mow and he won't let me do it either. It looks like a jungle and is just awful - the "lawn" is actually just native grasses, dandelions, weeds, etc. - rural as I said, we have 10 acres, and no neighbors nearby. Am getting off topic, sorry about that, I didn't mean to write a novel. Not quite sure if I'm replying or posting in the right place. Will email you soon. PLEASE KEEP IN TOUCH - there are no support groups locally. We'll keep fighting. Georgia
  18. Hi and don't despair. In the beginning of my friend's treatment we heard "everyone is different" for almost every question we asked regarding progression, lenght of survivial etc. Stage iiiB lung cancer is considered advanced and in Ed's case, inoperable. However, he is getting treatment with "cure" in mind, according to both the radiation oncologist and the internal medicine oncologist. I have my serious doubts - although optimistic, but he is doing quite well with three weeks of treatment behind him and 4 more to go, both chemo and radiation. He is sleeping an awaful lot each day, but that's OK and it's expected, other than that he is realtively symptom and side effect free at this time. We keep waiting for the other shoe to drop but so far so good. Keep a positive attitude and one day at a time, and everyone is different and responds differently to treatment. Chin up!
  19. Isabelle49

    Port?

    Lin, great. Let us know how it goes. Blessings
  20. Lalo

    ROID RAGE

    Hi, I haven't posted in awhile because my friend that I take care of had his first round of chemo - 6 days, and radiation everyday since July 29. The chemo along with the steroids made him an actual crazy man, and I thought who is this person. He was anxious, short tempered, and I even would say down right hateful and mean. I knew it had to be from the steriods and by the end of day 6 i was on my knees thanking God this first round was over. Tomorrow is the end of three weeks and he is back to his normal - pre steriod - person, and even with 3 weeks of radiation in him the fatigue has hit him but not like he had expected from all of the "prepatory" meetings with the doctors and nurses. The fatigue is bad but not debilitating and there has been so far no other side effects other than the skin turning pink. Has anyone else had such good outcome after 3 weeks?
  21. Last week
  22. Lin wilki

    Port?

    Thanks I will follow up once I talk to my doctor and hopefully get a port put in.
  23. RonH

    Port?

    I have a port that was implanted after my initial ChemoRadiation, but before the follow-up chemo and now 18 immunotherapy infusions so far. They draw the blood samples from the port as well as do the infusions, normally with only one needle stick to do both. The lab is on site, so the blood samples are drawn and analyzed while I'm in the chair and if okay, out comes the infusion bag and in goes the infusion. Afterwards they flush the port with saline through the same needle and then inject some heparin into it to prevent clotting. This needle stick is normally pretty painless, but do use the numbing crème starting and hour or two before the appointment. I actually had the port used the very next day after it was surgically implanted. I've never had them have to insert the needle into the port more than once whereas I had them make 4 or 5 attempts to find a good vein in my arm. It was very rare for them to get an IV into my vein on the first attempt. By all means, get a port, especially if your insurance covers it. The only drawback is after you are done with treatments, the port will have to flushed in a fairly frequent basis, or it has to be removed. Also the tube running under your skin up from your chest to the jugular vein in your neck feels a little strange at first, but you get use to it. It is not really noticeable to other people unless you have your shirt off as the there is a lump where the port is and if someone looks close, they can see the indication of the tube under the skin.
  24. Lin wilki

    Port?

    I am only 6 weeks into my immunotherapy trial. Infusion every 2 weeks. Nurses having trouble finding a good vein. Should I get a port? Doc said before I started I didn’t need one but I’m looking at the long view. Anyone else make the decision to get a port?
  25. Earlier
  26. Hello, my 69 yo husband was diagnosed with lung cancer in April; he started 6 weeks of radiation and chemotherapy in June. He just finished the last radiation on July 29. He was doing well for about 4 weeks but the last 2 weeks have been tough. Esophagitis (inflammation & constriction of esophagus) was mentioned as a possible side effect by his radiation oncologist. In early July, he was given recipe for a "miracle mouthwash" (lidocaine, Benadryl, antacid) which you swallow. It is supposed to coat the throat and esophagus, numb it, so he can swallow and eat, drink. He did not like the taste, said it changed the taste of the food or drink, numbing only lasted a minute or so and stopped using it. He has lost weight, is 6'2" and weighs 151 lbs. When he tries to eat soft foods or drink water (has to use a small coffee stirrer type straw), it is painful, so he doesn't want to try anymore. If he happens to sip too much liquid or does not chew soft food up completely, he ends up retching with a lot of chest pain (does not usually bring anything up). He had a cup of chicken broth one day; the next day he had half a soft boiled egg - that's it for the entire day; He was given oxycodone for pain but it had little effect. Recently, he had IV morphine and fluids for dehydration. He now has morphine delayed release pill and morphine liquid. Have looked on line for remedies & also advice from nurses for esophagitis and dysphagia (difficulty swallowing) and found some suggestions that he has already tried without success. Was told esophagus/throat would be back to normal in 2-4 weeks; don't think he can last that long. His doctor mentioned a feeding tube which he rejects. Just read on line today about esophageal dilation done with an endoscope and balloon to expand width of esophagus. He says the only way he can be comfortable without pain is to lay down; so he spends most of the day laying down or napping. He is also extremely fatigued. Will discuss dilation and extreme fatigue with doctor next. He is also irritable due to the pain which is understandable. Would love to hear from anyone else who has had side effects of esophagitis and dysphagia and how you coped with it. He can't do this for 3 more weeks, it's too much pain and weight loss.
  27. My mom has Stage 3A NSCLC. Her treatment plan was chemo & radiation concurrent. She completed it, waited 6 weeks & did Scans.I was under the impression the tumor would be gone after treatment. It’s not, but it shrunk from 2.4”to 1.9”. The Dr only speaks positive & makes it sound like that was exactly what we wanted to happen. Can a1 tell me if treatment typically makes the tumor go completely away? What are our odds now? She is doing immunotherapy. Can it shrink the tumor?
  28. Good morning - I just posted to the new member site My name is jenn. My mom has newly diagnosed iiia lung ca. No symptoms. Otherwise healthyexcept some hypertension. She starts cisplatin / gemzar today. 1st cycle / 1st treatment with hopes of shrinking for surgery. About me: 35 y/o daughter ... currently 6 months pregnant, working full time, raising a toddler with my hubby an hour away from her 😥 I read forum about joining her for her long treatments (no one wants prego at the infusion center), my OB really doesn't want me doing 1hr each way. I'm just so torn. How can I help her and take care of myself? She has my dad and friends but I want to help but feel so limited - like I'm choosing my baby over her. If she does have surgery (praying!) ... it will he 2hours away so I'm not sure I can go with being so close to delivery. I dont want to stress her out but she us so stuck in her head right now sometines i think her (and my dad) forge rim pregnant. I understand they hhcaveca big problem on tgeit hands but u have a big worry too! Any suggestions to help copeor get to assist her/ him
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