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BridgetO

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Posts 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. Yay, Tom! I understand the issue of  now thinking you'll live longer than you thought you would. Before I was diagnosed with lung cancer (stage 1a garden variety adenocarcinoma), I had a Stage 3 rare and aggressive type of cervical cancer with a "dire prognosis" (that's in my medical record!) I had aggressive treatment, which led to a lot of late occurring and long term side effects. I felt like I wasn't going to have a long life. I resolved to live as well as possible in whatever time I had left, but I refused to make plans for anything more than about a year out. For several years at every CT scan I was sure this would be "the one" and they would find mets. But after about 3 years some optimism about my life span began to creep in. About 5 years out, "something" appeared in my lung on the CT scan and It turned out to be the adenocarcinoma. I was actually relieved that it was a new primary cancer rather than a met from the cervical cancer! I'm now 13 years out  and still NED on the cervical and almost 8 on the lung cancer (as well as 16 on a breast cancer). I no longer expect bad news, although I know recurrence is still possible. At times I'm amazed that I'm still up and moving around and I have a pretty good quality of life, even, at 78.  I hope you will do at least as well!  You too, Rikki, and don't spend all of your retirement savings!

  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. June, I'm sorry you're having such a hard time with your treatment. And "hard" is really an understatement for what you've gone through and continue to go through You might want to consider asking for a palliative care doc on your team. Some think that palliative care in terms of hospice, but that is only part of what they do. They can help people with chronic illnesses and/or difficult side effects from treatment find solutions for pain and other symptoms and help improve quality of life, while continuing to treat the illness.

    I wish you comfort and healing.

  9. You've been through a lot!  I've never had an issue with passing out, but once I was woozy from a gastrointestinal virus and probable dehydratiion and fell getting out of bed and clonked my head on the nightstand, not injured but it was very upsetting. I can't imagine how scary it must have been finding you had passed out while driving.

    If you want an additional source of support, Lungevity has a couple of programs that might interest you. One is a Lung Cancer Help Line, where you can talk to an oncology social worker.  The phone number for that is 844-360-5864. The other is peer-to-peer support. You can find out about both of these  on the main Lungevity website, Lungevity.com.  I know how important it is to have someone to talk to, and sometimes it needs to be someone other than family. I've used the Cancer Counseling Center at the hospital where I've received my treatment and found them really helpful. 

    Hang in there, and I hope you can find the support you need. We're always here for you, too.

  10. 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!

     

     

     

  11. 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.

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