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in MEMBER UPDATES
Posted June 15
in INTRODUCE YOURSELF!
Posted June 2
My thoughts are with you during this time. I'm so very sorry for your loss
Great news on your scan!
Posted June 1
The waiting is the worst!
I wandered into public for the first time in awhile to pick up some tomato and jalepeno plants - ours got zapped by the horrible wind we had for 4 straight days. I donned a handmade mask and a hat - the mask to supposedly protect others from my possible germs and the hat because I have not had a haircut since March. Not only was I overheated from wearing the mask and hat, I was overwhelmed by people! My neighborhood consists of 4 homes and 11 people, all separated by 5 acres each. We may see each other in the distance and wave, but that's about it! In my home, it's just my husband and I. We've gotten so accustomed to grocery pick up and Amazon deliveries that I am going to have a hard time entering society again!
I'm sorry to hear about your husband's lung cancer recurrence. I hope that a treatment plan is set quickly so he can "get the show on the road".
Posted May 27
I hope you are recovering well from your surgeries and I am sorry to hear about your advanced stage cancer diagnosis. I'm sure it's been a whirlwind since February and the fact that you are here tells me you are a fighter. Luckily, lung cancer treatments have come a long way and most folks here are benefiting from those advancements, precision radiation being among them.
Please know we are here to support you during this crazy and tough time. We have several advanced stage warriors here who continue to LIVE their life. We are all about supporting that here. Please reach out when you need and take a look around. When I am feeling discouraged about my mom's cancer journey, all of the stories of survival help lift me up to continue to support her. I hope you find that here as well.
Posted May 26
Posted May 12
My deepest sympathy for your dad's diagnosis. This is a scary time. I understand how you feel - my mom/best friend was diagnosed with NSCLC about 4.5 years ago. The past 4.5 years have been a roller coaster, but she is still here and living her life. There is hope after a lung cancer diagnosis. While I don't have an opinion either way about your dad's treatment plan because I don't have personal experience with Small Cell LC, I do know that most treatment plans are aggressive ones since SCLC can be so aggressive and tricky to treat. The good news is that docs are finding tricky treatment options to battle against it, especially in the past few years. Also, rather than hearing a numerical stage like stage 3a or 4, you will likely hear limited or extensive stage.
My advice as a child who acts as a caregiver and/or care advocate is to build your knowledge about your dad's specific cancer and the treatments that are being recommended. Kristin referred you to Lung Cancer 101 on LUNGevity's website - that is a great resource. Their website also has checklists of questions to ask docs during various phases of diagnosis and treatment - I used them during my mom's 1st lung cancer recurrence and they were very helpful. I have access to my mom's online medical chart. Although I have attended most major doctor appointments, I can't now due to COVID, so I rely on her online medical chart to keep up to date. There is so much information thrown at you in early appointments that I hope your dad is able to take someone with him to appointments or have someone on speaker phone. Another piece of advice is no matter what role you play in your dad's cancer battle, remember that you are still his daughter. Your relationship will evolve with him through this process, but there will be times that he needs you as a daughter and you will need him as a daddy. Finally, people will tell you to be sure to take care of yourself (I HATE that), but you need to do what you need to do. I ran myself ragged while my mom is in treatment, both times. It's what I felt I needed to do (I am the only child and my dad is disabled, so there is no one else to help) and I survived it, you will survive whatever you choose to do as well. Take care of yourself as much or as little as you need to feel okay about this situation.
Ohh and 1 more finally...we are here for you. These forums are a great place for information and support. Steve had a great suggestion - check out the posts in the small cell group or of those who list small cell in their title...we have several caregivers and patients who have been recently diagnosed with SCLC and are navigating the system just like you and your dad.
Hope this helps a bit.
Take Care (or not!),
Posted May 11
My mom had a "thickening" around the area of her tumor after her tumor initially shrunk (she was on Ketruda + Alimta + Carbo at the time). Her docs suspected inflammation (which is quite common in the first 4-6 months of treatment) but they couldn't be positive. My mom's pulmonologist biopsied the area to see if he could find any cancer cells. All of the 20 or so biopsies came back negative for cancer. This only told us that where he biopsied did not have cancer cells, but it was not a definite answer as to whether or not the "thickening" was just inflammation. But the biopsies helped us to decide to continue with immunotherapy and chemo for a bit longer to see if the "thickening" reduced. Luckily, it did and after about 6 months, was gone. It was then identified as just inflammation.
So, long story short, I don't know of a specific test to see whether growth is cancer or inflammation. It's hard to decide what the best treatment approach is. Perhaps this would be a good time for a second opinion if you and your wife are questioning the treatment change.
Your mother will likely not need most of the things that Robert discussed in his post - the potassium and B12, and nausea are mainly related to the Carboplantin his wife is receiving along with the Keytruda. My mom did about 1 year of Keytruda alone, she began with chemo and Keytruda - this was where most of her issues came from. Once she was on Keytruda, she had a much easier time. Here's what most people experience with Keytruda - some sort of fatigue, itchy skin/rash (some people have success with certain types of body washes and creams, my mom had to take benedryl to tone down the itching), issues with thyroid function that will likely need to be doctored by meds.
If your mom's cancer is reduced by Keytruda, she is in great hands with immunotherapy. It has helped so many people with late stage diagnoses, my mom included. You can check out my mom's 1st year of treatment with immunotherapy here.
Posted May 3
Great work Michelle! Congrats!
Posted April 28
Diane- I am sorry to hear about the progression into your husband's brain. I hope that the radiation does the trick like it has for so many others.
Posted April 27
My thoughts are with you and your family. I am so very sorry.
Posted April 25
I too am very sorry to hear that your dad is so unwell and echo Bridget's and Tom's reviews of Hospice.
My mom was recently admitted to the hospital for sepsis and was there for 3 nights. It killed me not to be with her and it felt like a sick joke to me too. What an awful thing to go through at the worst possible time - I am so sorry. Please know we are here for you.
I am happy to hear that you finally get to move forward on the biopsy and ultimate plan of action!
in CAREGIVER RESOURCE CENTER
I've said this before, your mom is so lucky to have you. I am happy you have the capability to be by your mom's side until the very end. I hope that you can build more happy memories with her during this time.
Posted April 14
My mom had typical side effects - flu-like symptoms for about 10 days, starting about 3 days after infusion. We were surprised that she had these side effects because she had a similar chemo combo a year prior and had little side effects. Both times my mom had severe acid reflux that was the main cause of her nausea. Once it was under control, she didn't have much nausea, just mainly aches, lack of energy, and an overall blah feeling. It wasn't a walk in the park, but she managed ok.
As far as being depressed and worried about it affecting his outcome, I think you have reason to be concerned. I honestly feel that this fight is 75% our will to overcome and trudge on no matter what the obstacle is. Do you think your dad would be interested in becoming a member of these forums? I know they can provide a great help for patients and caregivers alike. LUNGevity also had a support line in which you can get set up with a peer who has gone through something similar. The main LUNGevity website also has great videos of lung cancer survivors that were very uplifting to me, especially those who had late stage diagnoses.
Finally, here are a couple of books I have picked up along the way that have been an inspiration to me: Second Wind, Thriving with Cancer by Dann Wonser, Roads to Meaning and Resilience with Cancer by Morhaf Al Achkar (I haven't had the chance to read this yet, but met the author behind it. He shared some stories from the book and it was very inspiring), and It's an Extraordinary Life, Dont Miss it, by Randall Broad. I got all 3 books from LUNGevity sponsored events and met all 3 authors. They are extraordinary men who share so much hope and resilience.
Hope some of this might help/answer your questions.
Posted April 13
I'm happy to hear of your dad's clear brain MRI. My mom received radiation and chemo together as Tom and Bridget have. My mom also went on to immunotherapy when she had her 1st lung cancer recurrence. She was a former smoker, as well, and also has RA. Her original diagnosis was NSCLC, 3a. Luckily, she tested high for PD-L1 and was a good candidate for Keytruda. Even though her docs were concerned about her RA and immunotherapy, she did fine with it as far as RA goes and remained off of any RA meds while she was in active treatment - for about 1 year. So, I am happy that your dad's doc okay'd him for immunotherapy, if that is the route they end up taking.
What have your mom's docs suggested?
My mom had several pleural effusions during her cancer treatments, although they were never malignant. She continued with treatment while she eventually went to weekly outpatient visits with her pulmonologist to remove the fluid because it continued to build up. Eventually the issue was resolved. My mom was always the deciding factor when and if the fluid was to be removed - it tremendously effected her breathing. Again, the fluid build up wasn't malignant.
Your mom's docs will probably be the best to decide how to deal with the fluid.
Posted April 2
I briefly responded to your other post. Thank you for sharing your struggles with caregiving. It's not an easy job and so many of us have felt the same way you are right now. I wore myself so thin that I was a zombie at work and had nothing left to give my husband. He felt abandoned, rightfully so. I was thankful he worked graveyard shift because I would come home from work and lose it, screaming and crying in the shower. I'm pretty sure our 2 cats thought I had gone crazy and, honestly, I had.
I live about an hour from my parents, so I was not with my mom everyday. This is a good thing because I work with individuals experiencing homelessness and even though we were not concerned about COVID then, I am definitely exposed to stuff that could be detrimental to my mom's health. I installed a couple of security cameras so I could keep an eye on my folks while I was away (my mom was the caregivier for my dad during both of her cancer battles). I was obsessed with checking the cameras every few minutes, it was awful. I call my mom every day on my way home from work. Our discussions would revolve around how she was feeling, is she eating, is she taking care of herself, etc. Every time I hung up the phone, I would feel sick with worry that it would be the last time I spoke to her. But slowly, our conversations started to be more about her day than how she was feeling. The pit in my stomach from worry started to subside. I now only check the cameras a couple times per day. My dad is now in an adult family home and I just want to make sure my mom is fine. Cancer has changed our life and we will never go back to the way things were, but we have found our new normal. You will be able to find that to.
I don't know what kind of relationship you have with your mom, but I am extremely close with mine (I'm an only child and she has always been my best friend). I put the pressure of being strong on myself and work very hard at it. I keep the tears at bay when I am with my mom and cry away from her. But there was one time where I was so scared that I would lose her that I just needed reassurance from her. She was laying in bed. I laid down next to her and started to cry. She hugged me and I asked her not to leave me. She promised that she wouldn't. She held me and we both cried. That moment was exactly what I needed and gave me the strength to continue fighting for her. It did not negatively effect my mom in any way and brought us even closer. I bet your mom can handle hearing your concerns, just like my mom could handle it. And who knows, it may change things for the better.
Finally, do what you need to do to take care of your mom, even if it is wearing you thin. One of my pet peeves was when people told me I should leave the hospital and get some rest or that I needed to take better care of myself. Taking care of myself means that I am taking care of my mom. Despite total exhaustion, I pushed on. You should do what you see fit. You will survive this no matter what your choice is. Ohh, and give yourself a break about smoking. If this is your way of coping with stress, fine - who are we to judge? Smoke outside, away from your mom. I have family members who smoke. They know to smoke away from my mom. She has had no health issues related to being in the presence of smokers who do not smoke around her.
Hope some of this helps.
If it is support and HOPE that you are looking for, you have come to the right place. Welcome! I too was a caregiver for my mom during her lung cancer battles. I know it's not easy being strong for your mom despite your worry for her and having your own stuff going on. I am happy that your mom has you to count on.
in JUST FOR FUN
Posted March 31
I love playing Yahtzee with my family. All you need is 5 dice. And if you want to play the official game with the score cards, I'm sure you can print one online. Depending on how old your kids are, I always loved playing Slap Jack, War, and GO Fish with my dad.
The side effects you are having from your treatment are pretty common, but you should let your docs know what's going on, immediately. Your docs should have given you a prescription for nausea - if not, contact them and get one. And take the meds regularly. They can also give you something for the diarrhea. The good news is that these side effects are temporary. My mom received chemo + immunotherapy every three weeks, as well. She would have flu-like symptoms for about 10 days between her infusions. Everyone is different in how they react, but it is usually the same every time. So although you will likely have these issues with every treatment, you will be able to anticipate them and take meds to help ease them. Chemo is no walk in the park, but it looks like the treatment plan you are on is the standard of care for many late stage lung cancer patients. And like so many others with late stage diagnoses, including the came kind of chemo you are currently receiving with your immunotherapy is likely temporary. My mom received 6 doses of chemo + immunotherapy and then went on to immunotherapy alone. Others receive 4, and others receive 8-12, it all depends on how quickly the cancer reacts to treatment.
You can and will get through this. It's a tough road, but so many others have done it, so you can too!
Posted March 25
It was snowing here this morning! lol Nothing stuck around, but a bit of a surprise since it's been so sunny recently!