Judy M. got a reaction from Robert Macaulay in Chemo Questions
Had 4 rounds of Cisplatin/Alimta. Lost about 1/3 of my hair. So, it just thinned and the texture became finer. Finished a year ago and same as it always was now. I believe it's the Taxol drugs that cause you to lose all your hair although everyone IS different. There are various side effects and you won't know yours until your first round. They will remain the same each time, but I did have a cumulative effect where each round was more intense version of the same. Once you know what yours are there will be those on here who have had them, gotten through them, and will be glad to do all they can to help you do the same. There have actually been some who barely experienced any side effects at all on strong chemo. Just a roll of the dice. You don't know til they land.
Judy M. reacted to LexieCat in Wife Stage 2 Adenocarcinoma - post lobectomy
Here's a fairly recent article on the status of studies regarding adjuvant targeted therapy: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5723861/.
It sounds pretty inconclusive overall, though there are hints that it might help SOME patients who have received curative treatment. It still looks to me as if waiting to use it in the event of a recurrence makes equal sense.
Bottom line, I guess, is that it's a pretty personal choice. Even with a SLIGHT potential benefit for Stage Ib survivors, I opted not to go with adjuvant chemo. If it provided a clear-cut significant chance of preventing recurrence I would have gone for it, but as it is, I did not want to put myself through it for the very remote possibility it might help. Someone else might weigh the considerations differently and decide on a different course of action.
Judy M. reacted to Jwags23 in Greetings from a new guy
Hi. Scan appointment went well. We have alot to be thankful for. There is significant reduction in tumor size. My doctor was pleasantly surprised. I would even say amazed. Many have been praying for me from the start. Praise God for the good response. I live in Salem County NJ. I am receiving my care at the Penn Medicine system, Abramson cancer center. Before the scan, I was on Alecensa for three weeks. I also was taking a protocol (5 weeks) of over the counter and off label prescription medicines given to me by an excellent naturalist doctor. I learned about her from a book my wife gave me, "The Cancer Whisperer". The author, Sophie Savage, is a stage IV lung cancer survivor. Thanks.
Judy M. got a reaction from bes in A Lot Going On
Have had a lot going on. Really no good news other that I'm still here and still in the fight. With so many new things going on in lung cancer treatment there's still hope.
Opdivo stopped progression for 4 months then major progression. I'd only had my original 3 lung tumors that had been treated with SBRT, a bone met in hip, and one in adrenal. All pretty small. Now have 2 more bone Mets, in both adrenals, spot in liver, and pleural effusion which we don't yet know if it has cancer cells.
The ablation I had on my left hip trochanter was worse than ineffective. This may (and I believe was) the result of an incompetent doctor. Increased my pain a lot, did not push back the tumor, and put me on a walker for 3 months. An expert in the field of Orthopedic surgery who just did my surgery said bone cement should not be put in the hip, it's for vertebrae. He removed as much as he could.
Hip tumor had eaten away part of my greater trochsnter and I had a crack somewhere in that left leg. They were concerned my femur would break. Sent to an Orthopedic Surgeon who specializes in treating bone tumors at a teaching hospital in my state. He placed 2 rods and a screw in that leg and just 10 days out now can already feel the difference in my pain and ability to walk.
Had a pleural effusion in left lung. The tumor there had progressed some. The effusion itself was very frightening because of the difficulties in breathing I experienced. Having it drained wasn't bad at all. Only slight pain and now I feel like a new woman. They drained a quart of fluid from my left lung that's now being tested for cancer cells.
Biopsy was taken of the bone met in my hip by Orthopedic surgeon. Waiting results. This is the first time my bone met has been biopsied since my Oncologist decided to only test the adrenal tumor originally and go with bone tumor being the same. Since I've had 2 primary cancers ( breast and lung) this may not be the case.
They are giving me 2 or 3 weeks to heal from leg surgery while deciding what to do as far as radiation and chemo next. A woman on another Lungevity forum I belong to who also has low PDL-1 and only KRAS mutation suggested Avastin. She said this had stopped the progression of her tumors once for 1 1/2 years and then again for 2 1/2 years between their trying other things. Right now simple stability looks pretty good. So I bounced this off my Oncologist APN. She said it doesn't work for everyone. I replied that as far as I know neither does anything else they have. So, we'll see. Has anyone out there had experience with Avastin? That's my question for today.
My conclusion from all this is that having the ablation was definitely a mistake. Other than that just time to put on what I think Tom calls my battle rattle and keep fighting. Can't decide if this is round 3 or 4. Probably three.
Judy M. got a reaction from Tom Galli in A Lot Going On
Thanks so much for your replies. There is another Oncologist in the hospital where I'm being treated who I had considered going to after my Oncologist left. I was told I could see both of them before I made a choice. He's treating my sister-in-law who has another type of cancer and has done very well with her. Her cancer is rare and aggressive and she's had a lot of treatment but he's managed to bring down some number that is significant in her type of cancer. And she's still with us. I'm wondering if it would be a good idea to try to see him since he already had access to all my treatment history and might be able to see him quicker. Or will I run into more doctor politics as so often happens? I hate that. I've run into that twice already. I did manage to get the doctor I wanted, but they always fuss about it. Since so many of the doctors you see are referrals and you don't know them at all I think there should be less fuss if that doctor isn't a good fit and you want to choose another. And you're right Tom. I have a very good Radiology Oncologist right now. I chose him after referral to the other doctor in the practice and his messing up the Radiation on my hip. But all this is somewhat my ramblings rather than getting started on what I need to do because I feel overwhelmed.
Right now trying to find a way to get the Radiation under my belt. The pain of lying on the metal table on the bone Mets in my leg is too great for me to lie still the required amount of time. Managed to get the 20 min. set up done yesterday on heavy drugs. Now told my first treatment will be 40 min. My Palliative Care doc is again jacking up my meds to enable me to do that. I worry about simply O. D. ING. But I suppose if I do I'm in a hospital.
Judy M. reacted to BridgetO in A Lot Going On
Hi Judy, When I wanted a second opinion on my non-lung cancer, I went to Oregon Health Sciences University Hospital.Do you have a teaching hospital or a major cancer center anywhere near you? If so, you could call the oncology department and see if they have a lung cancer specialist who could do a second opinion. Or, if you have a primary care doctor or pulmonologist you trust, you could ask them for help finding a second opinion doc. Stress the time constraints. Best of luck.
Judy M. reacted to BridgetO in Recently diagnosed stage 3A
Hi Robb and welcome,
Will your surgery be by VATs (laparoscopic) or open surgery thoracotomy)? I'm not familiar with Pancoast tumors, but I wonder whether open surgery is needed due to the location. Sometimes open surgery is needed because of the size of the tumor, but I don't think they'll know that until after you have your chemo and radiation since that is usually expected to shrink tumors and make surgery more feasible.
If your doctor says you will need open surgery, I'd suggest asking why it can't be done by VATs and if you're not satisfied with the answer, you could get a second opinion. I had VATs and the pain was manageable and was in fact fairly minor once my chest tube was out. My tumor was small (Stage 1a), so my experience might be different from yours. I hope you'll get some responses from people on these forums who have had larger tumors removed and maybe from somebody who has had a Pancoast tumor. I think 3 months off work would be unusual for a lobectomy unless there's some kind of complication.
Hang in there!
Judy M. reacted to Robert Macaulay in Got a Good Joke???
A frog goes into a bank and approaches the teller. He can see from her nameplate that her name is Patty Whack.
"Miss Whack, I'd like to get a $30,000 loan to take a holiday."
Patty looks at the frog in disbelief and asks his name. The frog says his name is Kermit Jagger, his dad is Mick Jagger, and that it's okay, he knows the bank manager.
Patty explains that he will need to secure the loan with some collateral.
The frog says, "Sure. I have this," and produces a tiny porcelain elephant, about an inch tall, bright pink and perfectly formed.
Very confused, Patty explains that she'll have to consult with the bank manager and disappears into a back office.
She finds the manager and says, "There's a frog called Kermit Jagger out there who claims to know you and wants to borrow $30,000, and he wants to use this as collateral." She holds up the tiny pink elephant. "I mean, what in the world is this?"
(You're gonna love this.)
The bank manager looks back at her and says, "It's a knickknack, Patty Whack. Give the frog a loan. His old man's a Rolling Stone."
(You sang it, didn't you? Yeah, I know you did.)
Never take life too seriously.
Judy M. reacted to Tom Galli in Got a Good Joke???
The CEO of Big Oil Inc looked around the room before the meeting and noticed an empty chair. He asked: "where is the staff geologist?" The chief engineer answered: "Out forming a rock group."
What is the difference between a civil engineer and a lawyer? A civil engineer gives concrete answers....
What is the difference between a mechanical engineer and a civil engineer? A mechanical builds weapons while a civil builds targets.
What do civil engineers use for birth control? Their personalities.....
Judy M. reacted to Steff in Got a Good Joke???
The week is quickly getting away from me! I don't know about you, but with the grey weather (at least in Washington State) and cold temperatures, I could really use a good laugh. Do you have any good (appropriate) jokes?
Unfortunately, I have never been able to remember jokes and if I attempt to tell one, I mess it up and people just stare at me. There is 1 exception to this. For some reason, I can remember a joke a 3rd grader told me many years ago and it's my "go to" joke. Keep in mind that the school I was teaching at the time is a small, rural, farming community....here goes....
Where to cows go on dates?
To the mooooovies!
Judy M. reacted to danielpaul in Introduction
My name is Daniel Paul. I am 40 years old and was diagnosed with stage 3 adenocarcinoma in June 2016. I give thanks to the Lord for that ability along with many other blessings.
In order to understand what Sarcomatoid mesothelioma is the rare and also the most aggressive form of cancer. It is usually found in pleural mesothelioma. Diagnosis and treatment.
Judy M. reacted to Tom Galli in Still a "Newbie" Researching Surgeons, TX, Internet, My Feelings / Denial
Cancer surgery (VATS or not) is pretty complicated. I'd focus on finding a thoracic surgeon who is very experienced with lung tumor resections. Surgery is more of an art than a science and the more surgeries performed, the higher the skill level and the intuitive understanding of tumor resection complexity. How does one find a good thoracic surgeon. Here is some of the qualities I think are important.
You have an early find and that gives some time for you to close on a decision. Without a biopsy, how was adenocarcinoma determined?
I have a lot of faith in precision radiation. My fourth line treatment was CyberKinfe, a form of SBRT persuasion radiation. Radiation oncologists are getting aggressive these days in frying tumors that were surgical resections just a couple of years ago. Of course, there is the tricky placement of the tumor to consider. Here is information on the different types of radiation used to treat lung cancer.
I was also paralyzed by fear and uncertainty well into my 3 years of treatment. I held most of the stress inside and became deeply depressed. So be mindful of depression. I note you've not mentioning a general practitioner or family practice physician. I found mine an invaluable resource, calling my specialists and insisting on coordinated and coherent treatment plans.
Never apologies for a long post, not here. This is the place to pour out your soul knowing full well that each of us has gone though what you are now experiencing. We all start with a long post.
Stay the course.
Judy M. reacted to DrBee in Doc implying chemo and radiation can't be done at the same time
For some reason I can't quote you, Bridget or Judy (quoting you) but that is super helpful! ❤️ BTW, update, we learned we are ALK+, so we are not on immuno/chemo but targeted therapy which is working BEAUTIFULLY!.
Judy M. got a reaction from DrBee in Doc implying chemo and radiation can't be done at the same time
I don't think doc is saying you can't have it but only that you can't have it together and the chemo/immunotherapy you are getting right now is the priority. I had both, but consecutively not concurrently.
Judy M. got a reaction from DrBee in Doc implying chemo and radiation can't be done at the same time
Judy M. reacted to Tom Galli in A Lot Going On
This tough on you. I know. I’ve been there. There was that vast uncertainty that haunted me about my future. I wasted a lot of life pondering uncertainty trying to know how much time I had. I became undone. I know better now. I wish I could help you know that how much time doesn’t matter. What matters is what you do with the time you have.
There are only two certainties in the human condition. We are born and we die. Everything else is variable. Enjoy the variation. Why rush to certainty!
Forget the past, make the future irrelevant, and live in the moment. Embrace the simple things around you. Watch the clouds. Look at the moon. Watch a honey bee move from flower to flower. Simple things are the most interesting and are reservoirs of joy. Find joy Judy.
Stay the course.
Judy M. got a reaction from Tom Galli in Chemo and radiation complete, on to Imfinzi!
I'm with you Tom. Why not names easy to pronounce and spell? Is there a competition between them to see who can come up with the most weird and difficult name for the drug? Do they believe difficulty somehow correlates to how much they'll charge and does it? The why of this is just another of life's mysteries it seems.