BridgetO
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Posts posted by BridgetO
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wow, Kleo, that sounds awful! I had muscle spasms in my buttock as a reuslt of a very weird side effect of my gyn cancer surgery. It wasn't contiuous, though, but would come on very suddenly, usually when I was out walking. It was awful, sometimes I wondered how I would get home. At its worst, It made me feel like banging my head. The only thing that made it tolerable is that it didn't last long, maybe an hour or two. Two things that helped it resolve sooner were sitting with a tennis ball pressed in the center of the painful area, and lying down with alternating hot and cold packs. Sounds like yours is continuous, though. I can't imaging that kind of pain going on for a long time! Can you sleep?
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yay for Bob and durvalumab!
- Tom Galli and Robert Macaulay
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May you live long and prosper! There is life after and with cancer. I'm 73, have had two other cancers besides my lung cancer, one of them Stage 3 and with a "dismal prognosis". And here I am today, NED (no evidennce of disease) on all 3 cancers. I have some long term side effects from treatment, but my life is good, I travel (when I can afford it!) and I'm getting ready to start a new part time job, to add to the travel fund. So don't throw in the towel. I look forward to hearing how the stent procedure goes.
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Hi Helen and welcome.
I don't know the answers to your questions. There are some forum members who probably do, and i hope you'll hear from them. My only advice is to keep asking questions (including of your oncologist until you get answers that make sense to you. If you don't like or don't understand what your onc is telling you, a second opinion is an option. Are you being seen at a major cancer center?
Hang in there!
Bridget
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Where are those durvalumab twins anyway? Kleo? Robert?
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Hello Forum posters! These forums are a good place to share information, support and hope, Please keep in mind that what you post here can be seen by anyone.. For that reason we have a guideline against posting personal contact information like your address or phone number. If you want to send a personal message to a member, you can do that by using the little evelope icon at the upper right of the home page. Those messages can only be read by the intended recipient, so they can include personal contact information. Be aware that Lungevity doesn't check out members to be sure they're who they say they are, so when positing or personal messaging please have your personal safety in mind.
Please keep on sharing and supporting each other. It really makes a difference.
Bridget O
- arethamorce, Lisa Haines, Ramona and 4 others
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Oh well, it's only hair! Have you seen Susan C's photo with the t-shirt "My oncologist does my hair"?
- Tom Galli, Kleo and Faith&Hope
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Hi Susan,
Here are some thoughts about diet. The restrictions that Murphette describes are typical for people who are at risk for neutropenia from chemo. Neutrophils are a type of white blood cells that fight infections. Many chemo drugs cause neutrophil levels to go really low, which is called neutropenia. This puts a patient at a big risk of infection. I don't know whether Tagrisso, which isn't chemo, has a risk of neutropenia. I recommend that you ask your doctor this, and if there is this risk, ask about diet and other precautions to reduce the possiblity of infection. Otherwise, eat a healthy normal diet. Drastic diet changes are probably not really helpful. It is important to eat enough and to get enough protein, which is important for any kind of healing. Restricting your food intake won't help with your healing from surgery or with cancer treatment.
Hang in there,
Bridget O
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Hi Susan,
welcome here. I too am sorry to hear about your diagnosis.As Steff said, you'll probabably hear from other Stage 4 survivors soon. While I'm unfortunate in having lung cancer, I'm fortunate in having it discovered early, in a scan for something else. Please let us know what questions you have and how we can support you. There is hope, and I think you can find some of it here. There are a lot of new treatments for lung cancer and people are surviving with it and living good lives.
Hang in there,
Bridget O
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Hi Si,
As Steff says, we're getting your messages. A lot of us are thinking of you.Tell us more about yourself and your situation, if you feel OK doing that. Do you need information? What can we do that would be helpful?
Besides this forum that we're on now, Lungevity has a program that can match caregivers with others in similar situations for 1:1 support. You can find out about it here: https://www.lungevity.org/for-patients-caregivers/support-services/peer-to-peer-mentoring/lungevity-lifelin, on this forum,
Hang in there.
Bridget
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Hi Carolyn,
Here's another welcome message! I'm glad to hear the Afatinib is working for you. I'm also glad you found us. I hope you keep in touch here.
Bridget O
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Jane,
I'm so sorry to hear this. I don't think there is anything else I can say. I wish peace and comfort for both of you.
Bridget O
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Hi Tammie,
That's a tough diagnosis and it's normal to be confused and upset. Tom's advice is all excellent. (as usual!). My lung cancer was Stage 1, so not so difficult to navigate up til now. I did have a different (non-lung) cancer that was stage 3 and aggressive, so I have been through some aggressive treatment that included surgery, chemo and radiation. Two things I wish I had done differently. One is to ask about getting a port. It's good to hear you're getting one. My chemo was all done into veins and since only one arm could be used, getting vein access was difficult
Hi Tammie,
That's a tough diagnosis to hear. To be confused and upset is normal.
My lung cancer was early stage. I had a prior non-lung cancer that was Stage 3 and aggressive and for which I had surgery, chemo, and radiation and a bunch of long term side efects of treatment. There are a couple of things I wish I had done differently at that time. First, wish I had got a port. I had all of my chemo direcly into arm veins and since they could only use one of my arms,, vein access became difficult and often painful . I think you'll be more comfortable with a port. The second is to ask for,or be willing to accept more help. I had my spouse, who was great, and a sister-in-law who stayed for 10 days or so after my surgery which was wonderful. I had friends who offered help, but it was hard for me to accept it. I wish I had been able to ask specifially for what I wanted or needed, such as a ride to an appointment or some specific food on a specific date. I did ask a friend to put up a grab bar in my shower, which she did, and for which I am forever grateful. I have found that friends want to help out, but they don't know what we need unless we tell them specifically.
There were other people I could have asked for thngs, but I was hesitant. Wish I hadn't been. I have had friends with cancer who used webistes such as Lots of Helping Hands,(just as an example, there are others,) that let you put up specifically what you need and send it to a list of people you designate, I found out about these later, but if I need help in future, I'll definitely check out what's available.
Also, think about who, other than friends, can help while you're in treatment , so that you can relax more while feeling that you're putting less onto your family. I got groceries delivered,. I also got rides to some medical appintments from an agency here called Ride Connection, which uses volunteers. My mother, when she had cancer, hired a weekly housekeeper-- this can be a godsend if you can afford it. That way you can reserve family time for when you really need emotioal support and their company.
Working on the practical things like this helped me feel less helpless and more in control, important at a time when my body was doing it's own thing with cancer and side effects of treatment and the medical system was doing its own thing that was often beyond my understaning.
Hang in there and best of luck.
Bridget O
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Hi everybody,
I had a lower right lobectomy a year ago (adenocarcinoma 1A) . A CT scan in May shoiwed NED and some fluid in the space, which was described as normal. I was told that fluid will fill in the space where the lobe was and that eventually the remaining lung will expand somewhat into the space .Since my surgery, off and on I've had a sensation or sound of fluid in /around my lung when I breathe. In January I had bronchitis and during that the noise was loud enough that it could be heard by others. I think it was not exactly a wheeze but I'm not sure, because I don't have asthma and so haven't had experience with wheezing. Now it's very slight, more a sensation than a sound and it comes and goes. It.seems like a slight swishing or maybe someting in the bronchial tube. I haven't been too concerned because I can breath OK, no problem. Has anybody else had this sensation of fluid as late as a year after surgery?
I have a routine CT set for next month, and I'll talk to my pulmonologist about this then.
Bridget O
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I agree with Tom.This is something you should talk to your mom's doctors about. To avoid confusion, SABR is also called SBRT. Cyberknife is a specific brand name of SBRT. Has your mom consulted with a radiation oncologist yet? If not, she might want to ask for a referral. The radiation oncologists might have a different take on this than the medical oncologists or pulmonologists. Hang in there and keep asking questions!
Bridget O.
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xrays
in NSCLC GROUP
Hi bes,
I'm sorry to hear about your husband's prognosis. However, It's just that, a prognosis, an opinion. We never know what's going to happen with this disease. That said, it's an infoormed opinion, so we have to consider it seriously. Has your husband thought about seeking a second opinion? I did, not on my lung cancer, but on my earlier advanced cervical cancer and found it helpful in making treatment decisions.
BTW, my mother had radiation for pain relief for metastatic breast cancer that had spread to her spine. It was very effective in relieving her pain.
You and your husband will be in my thoughts.
Bridget O
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Hi Kathy,
I had a stage 1A lung adenocacinoma. I had a lobectomy and no furtther treatment was recommended. However, I previously had a stage 3, rare type of cervical cancer with a "dismal prognosis" (whatever that means). For that one I had concurrent chemo and radiation and then, based on a second opinion, some additional chemo. None of it was pleasant. I had side effects, including some that are permanent. I don't regret my treatment decisions, though, because today, more than 6 years later, I'm ALIVE (yay!) and no evidence of disase (double yay!).
Chemo is indeed scary. it's essentially a poison intented to kill off the cancer without killing us. In my case it worked, and I'm grateful. My quality of life if good today, I'm still able to travel (one of my great joys), I walk a lot and I feel well. (BTW, I'm 72)
As to alternative medicine, I'm a believer in it as an adjunct to conventional treatment, not as a substitute. During and for a time after my treatments, I had frequent acupuncture , which seemed to me to help with side effects. I also took some supplements and made some dietary changes on the advice of a naturopath. Don't know if it helped with the cancer, but in any event I'm in much better physical shape than I was pre-cancer.
We each have to make our own treatment decisions. In my case, It's been to throw everything at the cancer. I wish there was something gentler that worked, but I don't think there is.
Keep us posted.
Bridget O
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Hi DC,
Before I read Tom's response, I thought you meant that you hadn't got your scan results yet. If that's the case, call your doctor's office. Hang in there!
Bridget O
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Immunotherapy for EGFR+ NSCLC
in LUNG CANCER MUTATIONS
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You are definitely not alone. I think we should get t-shirts that say "LUNG CANCER: Been there, done that, got the t-shirt".