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BridgetO

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Everything posted by BridgetO

  1. Hi Stephanie and welcome here. Edive buddy is right that expecting blood levels to stay the same isn't realistic. Neutrophils- white blood cells that fight infections- especially take a beating, My lung cancer was stage 1a and I didn't need chemo., but 12 years ago I had a different cancer that was stage 3 and aggressive. Chemo caused my neutrophil count to dip and the second time it went to zero, an emergency situation. I was given antibiotics to stop possible bacterial infections . After subsequent infusions I had neupogen, given by injection, and it kept my neutrophils from crashing again. I also had an infusion of packed red blood cells when anemia reached a dangerous level. My treatment was 12 years ago and I have been NED (no evidence of disease) since. My point is that if blood levels of anything reach a dangerous level, there's usually some action that can be taken to remedy the situation- medication, biologicals, supplements, postponing your infusion until the level rises, etc. It usually isn't a reason to discontinue a regimen that's working. Advanced cancer of any kind is life-threatening and treatment often needs to be aggressive to control it. So hang in there, talk to your oncologist about the significance of each level that's low, and what if anything needs to be done about it. Hang in there and I wish you a long and meaningful life. Bridget O
  2. Hi Dina. Your recliner should be helpful during your recovery. And Lou's Tips and Tricks are great.
  3. Hi Dina and welcome here! I had a lower right lobectomy by VATS about 8 years ago and it was pretty easy, as surgeries go. I was released from the hospital the next day. One suggestion I have is to get a firm foam wedge pillow to use during your recovery. This will help your breathing and make you more comfortable. Your whole upper body needs to be on the slope, not just your head. I tried to accomplish this position with a range of other pillows I had and succeeded only in getting a crick in my neck. The wedge helped me rest and sleep more comfortably. Hang in there! Bridget O
  4. Hi TJM, Lou's suggestion of a dermatologist is a good one. If you already have a dermatologist, I'd suggest calling direct to that office. (If I recall correctly, you have Kariser, right?- I know it's hard to get a specialist appointment). With Kaiser, you can also send a photo along with an email on their site- If you don't already have a derm, you could send it to your PCP. edivebudy, that is one ugly lesion! Did the keyruda work?
  5. Hi Minh, Im sorry you've had so many challenges! You're really hanging in there. Good for you! I have a suggestion for the swallowing issue. Have you seen a speech pathologist? Many people don't know that speech paths deal with swallowing issues as well as speech. It makes sense since the muscles involved in speech and swallowing and coordinating those with breathing are the same. I've worked with a number of people with disabilities that caused swallowing problem with choking risks and helped them get set up with a speech pathologist for help with this. You could ask your doctor for a referral. keep hanging in there.
  6. If you can tolerate a lot of dairy, I suggest premium ice creams (high in fat!). And add butter and cream to anything you can. Potatoes mashed with butter and cream! If my doctor told me to gain weight, I'd eat a lot of See's chocolates. Also caramel sauce and fudge sauce straight from the jar. Of course I understand that a lot of this stuff might not sound good to you right now. And it may not be "healthy" but it has a lot of calories. You might also ask for a referral to a dietician/nutritionist for recommendations on food for weight gain. Hang in there, Minh, you've been through a lot!
  7. Yep, I' in the Northwest, too, and this weather is BAD! And this past Sunday, on one of the coldest days of the year, out furnace went out! Fortunately, we have a wood stove and a furnace repair guy who is next to being a saint in my book. He came out right away and got our dinosaur of an oil furnace running in a couple of hours. We actually feel fortunate. So many people in the area have been without power for days. I hope you and everybody else can stay warm!
  8. I'm so sorry for your loss. This is an awful disease!
  9. Good news for sure! I sure hope you don't get any more exotic side effects, or,for that matter, any garden variety ones. Just stick with plain NED!
  10. Scanxiety is normal, Ken, even though it's not pleasant. My fingers are crossed, along with those of the rest of the gang.
  11. Devastated daughter, I'm sorry for the loss of your mom. It sounds like she lived her life as she chose. And you supported her as her caregiver, even though you disagreed with some of her choices. Good for you both. I wish you peace and comfort.
  12. I agree with those who advise against waiting. 2.6 centimeters is not huge, but it's not a tiny nodule either. I had a 3 month "wait and see" but my nodule was under 1 cm at that time. I think asking for an opinion from a pulmonologist is a good idea.
  13. Another update from CancerLand. My wife is doing great. She's healed well from surgery and is now into chemo. Her hair is beginning to fall out and she's planning to get a buzz-cut tomorrow. A resource you may not know about: Any Great Clips salon will give a free buzz-cut to anyone whose hair is falling out from chemo. My friend with myelofibrosis is feeling more hopeful--she's on some new meds to help keep her red blood cells up. However, she tripped over one of her granddaughter's toys in the dark and now has a dreadful looking black eye. My other friend who's in hospice is getting good support from her hospice providers and is fairly comfortable. She can no longer cook and her husband, who is near 90 and an incredibly sweet man is having a hard time dealing with that and everything else. She now has a MealTrain, and I've offered to help them sign up for Meals on Wheels. Unfortunately, I've had to cut contact with my former co-worker, the Hamburger Helper person, because his issues exceeded my bandwidth at this time. He really wanted to get out of the nursing home, although he couldn't care for himself. He didn't want help getting a case manager or social worker involved, but rather wanted help getting his cash out of the bank, I think so he could plot an "escape." And, as for me, I was hospitalized earlier this month for a small-bowel obstruction. I had a Stage 3 gynecologic cancer diagnosed in 2011 and I'm grateful to be NED., but I've had a bunch of late-occurring side effects from the aggressive treatment that saved my life. The most recent is these small-bowel obstructions that started just before the pandemic, apparently from adhesions and strictures caused by the surgery and radiation. Treatment included a naso-gastric tube hooked up to suction to relieve pressure by removing by the "upper route", the contents that can't escape via the "lower route" . I tell you, it's worse than a chest tube! But I've recovered from the obstruction and the tube. I'm scheduled for an MRI to see what my digestive system looks like when it's not in acute distress. I'm also on a restricted diet and will be seeing a nutritionist to fine-tune it. Ahh, cancer- the gift that keeps on giving. I'm taking a couple of months off from work to deal with all of the above. And, by the way, the kitty is fine!
  14. Wow, BryJ, that's quite an adventure you've had! Seems like the nurse pulled the tube prematurely. I was sent home the day after my VATS lobectomy with the dreaded chest tube in place, connected to a one way valve and a bag. They said it needed to stay in until air stopped coming out. This took about 10 days. It was kind of a drag but nothing like what you went through. I'm glad to hear you're cancer free and I hope you have no more adventures in leak-land.
  15. Hi Karen and welcome. I'm sorry to hear what you're going through. My lung cancer was early stage and "garden variety", so the treatment was pretty standard. However, earlier I had a gynecologic cancer that was Stage 3 (large and spread to regional lymph nodes). It was aggressive and very rare type that had no published studies about it. My medical oncologist was inclined to treat it as "garden variety" since she had no evidence of other options. I chose to get a second opinion and sought out a doctor who was considered the "go to" person for rare gynecologic cancers. She had some experience treating women with this cancer and made some recommendations for further /more aggressive treatment, which my med onc was willing to try due to my "dire prognosis". It worked, I guess, since this was 12 year ago and I'm here today with no evidence of disease. So, if you can find a doc that has some experience with your specific type of cancer, a second opinion could be a good idea. I found my expert by asking a neighbor who was in a different department at our local teaching hospital to see if he could identify someone for me, and he did. All my best, Bridget O
  16. Hi Beth and welcome. Lou's information and advice is excellent. I just want to add something in answer to your question about the PET scan. Ordering a PET scan means that the doctor is suspicious that what the CT shows could be cancer. A PET scan shows areas in the body where there is high metabolic activity. Since cancer cells usually grow faster than normal cells, cancer will normally "light up" on a PET scan. If the suspicious areas in the lungs 'light up" it definitely increases the likelihood of cancer, though, as Lou says, only a biopsy is definitive. If the cancer has spread to other parts of the body, those would likely register, too. The higher the numbers on the PET, the higher the likelihood of cancer. Some things to know, though: sometimes other things like infections can also register on the PET, and sometimes cancers don't. My adenocarcinoma didn't show up there because it was small and slow growing , so not enough metabolic activity to register. Even though the PET isn't definitive, it does give the doctors information about whether to proceed with biopsy or to look for other causes for the abnormalities on the CT and Xray. If you let us know when your grandma has more test results, and what questions you have, we can probably give you more information. Let us know how we can support you.That's what we're here for! Bridget O
  17. Sounds promising, Ken! Did you get your cheeseburger yet?
  18. Hi Sarah, Sometimes surgeries are done on stage 3 lung cancers but usually after the tumor has been shrunk by chemo. I do agree with Tom and Karen about getting a radiologist consult and also other opinions . Two other things: If you decide to take time off to care for your mom after surgery, 3 to 4 months might not be necessary. I had a lobectomy and lymph node removal by VATS (video assisted thoracic surgery) for a stage 1 lung adenocarcinoma at age 71 and my recovery was pretty fast. I was released from the hospital the day after surgery (with a chest tube still in) and was taking short walks outside the next day. I could have taken care of myself after 4 or 5 days with two exceptions :needing help changing dressings on my chest tube site until the tube came out in 10 days and being unable to lift anything heavy (over 15 pounds, I think.) Of course I didn't have the anesthesia issue your mom has had. Nor did I have metastases in my mediastinal nodes, but 27 of them were removed and tested. But your mom's recovery might be shorter than you expect. I especially agree with Karen about seeking some advice or help for yourself about whether taking the extended time off work to be sole caregiver for your mom is in your, or her, best interests. If your mom has surgery and needs long term caregiving, a social worker could possibly help your mom (and you) figure out other options. I had some issues with my own mom over caregiving, so I know it can be hard to set limits. I, too, am an only child. I lived at a distance (several hours by air) from her, and there were no family members in her area that would provide much besides brief visits. My mom was a survivor of two advanced cancers, but the precipitating issue was that she broke her hip. I went down to be caregiver, or as I preferred to say, to get her back on her feet. Fortunately I had a lot of sick leave accrued at my job and my employer allowed me to use it for Family Medical Leave. So I took 12 weeks off. In the first several , it looked unclear that she was wanting to get back on her feet. She resisted her physical therapy and wanted to be waited on instead of doing what she could for herself. I sympathized and knew she had pain, but I also knew that the prognosis was poor for older people with broken hips, especially if they didn't get on their feet quickly. So I 'got tough" and told her that if she wanted to get to be able to care for herself I was there for her, but if not, she could decide to go to a nursing home. She did get more active in her own recovery and was able to be alone, with some housekeeping help, when I left in 12 weeks. If I had not had the paid time off, I wouldn't have taken that much time. I couldn't have afforded to leave my job, and additionally, the 12 weeks of caregiving pushed me to my emotional limits. All my best to you and your mom, and be sure to take care of yourself, too.
  19. Thanks to all for the good wishes! My wife is recovering well. She's up and about, taking short walks every day, and feeling much better since her drains were taken out yesterday. We had over a week of friends bringing us dinners. We had originally set up a Meal Train for two weeks, but told folks we were fine without it was great not having to cook much when I had more caregiving tasks. The food was both delicious and healthy and we still have some leftovers in the freezer. I'm grateful for all the support, both here at home and on this forum.
  20. Hi Julie, I'm glad you found us! Hang in there. Let us know how we can support you. Bridget O
  21. Fingers crossed for a cheeseburger soon!
  22. Hello Elki. I'm sorry to hear about your situation. Do hold on to hope. Live now, because you never know what will come. Statistics about survival are based on large numbers of people, and you are a case of one. My father-in-law had a type of non-Hodgkins lymphoma and was told that noone had survived with it for more than 6 months. He got into a clinical trial and he lived about 20 years longer. Have you checked to see if there are any trials you might be eligible for? I don't know what d system is for that in England, but maybe someone on here does. Also, could you get a second opinion? My lung cancer was Stage 1 and the treatment was pretty cut and dried. However, I had a prior gynecologic cancer, Stage 3 of a rare and aggressive type. My medical oncologist actually wrote in my chart that my prognosis was "dismal". I sought out a second opinion, and that doctor recommended some additional chemo. I belong to a health plan that only pays for treatment by in-group providers and I had to pay out-of-pocket for the second (out of group) opinion. My in-group onc agreed to follow the second opinion doctors recommendation. I am now 12 years out from that diagnosis and have no evidence of disease. Hang in there, Elki . I hope for all the best for you.
  23. Update from cancerland. My wife had a mastectomy yesterday. She was discharged to home just a few hours after her surgery. So now I'm in the caregiver role full time. Yesterday was difficult, both for her and me. Neither of us got much sleep the night before, since we had to be at the hospital at 5:15 AM. We didn't know whether she was going to be released same day or not, so had to prepare for both situations and were up late. When she was discharged, she was woozy and wobbly on her feet. I wasn't sure if I could help her up our front steps without us both ending up in a heap (my balance is none too good), so I called some friends for assistance and we all got in safely. She got less wobbly as the afternoon went on, but she was throwing up all day, despite anti-nausea meds. Fortunately the hospital gave us a supply of barf bags. By bedtime I was toast. We both slept well and today is much better. No nausea, pain relieved by tylenol and ice. I'm being a more relaxed nurse. Friends are signed up to bring us food for the next several days, which is wonderful. Got homemade bread yesterday and the same lovely folks who helped me get my "patient" into the house yesterday are bringing ice cream today, because it's my birthday --78! Things are looking up. Bridget O
  24. BridgetO

    A New Chapter

    Tom, I'm so sorry to hear about your increasing pain. Do you have a pain specialist or palliative care doc on your team? I wish I could email some pain relief and good sleep, or just send it through the air. Or something. You are a model of hope to so many of us. It hurts to see you suffering. Hang in there, dear Tom.
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