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Switching to chemotherapy from immunotherapy


RosieSD

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Happy thanksgiving week, hope you all get to enjoy precious time with your families. I’d like to share about changes in my treatment. I went through immunotherapy ( Opdivo and yervoy) from July until October this year and I was hospitalized the first week of this month. The immunotherapy caused my cancer to progress and spread to my left lung. It also affected my blood levels and left me severely anemic and dehydrated. 
 

My oncologist decided I needed to switch to chemotherapy ( Carboplatin and paclitaxel). I’ve received my second infusion this week and it’s been rough with the side effects. Most days I’m dealing with fatigue, headache, abdominal, chest and lower back pain. I’m prescribed heavy duty pain meds which I only use sparingly.
 

Through all of this, I’ also have a 4 year old girl I’m doing my best to take care of. I’m hopeful this new treatment works in spite of all the side effects. It’s easy to slip into depression when things get rough. I’m just thankful for this support community, it really helps to meet current patients and survivors who understand what you’re going through and encourage you on your journey. 
 

all the best, 

Rosie

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Rosie,

I'm glad to hear that your oncologist made the change for you.  Sorry to hear about the side-effects as they must be very distressing.  Add on top of it all taking care of a 4-year old and you surely have some challenges.  You sound strong even when you may not feel it.  I've not experienced it, but followed many other survivors here who have gone through chemo and am always in awe of their strength and determination as they meet the challenge.  I believe you are such a person.  I do want to remind you though that any of your symptoms should be reported to your oncologist as there are many ways to reduce some of the side-effects.  Others have also added a palliative care professional to their team to great benefit during difficult therapies.  If you begin to suffer too much please check into that.

Please keep us updated on your progress and ask any questions that may come to mind.

Lou

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Hi Rosie, life is not fair, isn't it? I also have a little boy who needs his mom and the past year saw me undergo tragic diagnosis, lobectomy, chemo and now targeted therapy. None of it was easy in any way. I recommend  you do not deprive yourself from medications that help with pain and symptoms. I was like that at first but gradually realized that I need to control pain if I am to have any reasonably good time with my kid and family so I took the strong pain meds when needed. Drink lots of fluids (electrolytes are important too) and even ask for more IV hydration before and after chemo if you feel you need it (my dehydration was so bad after my first chemo infusion I ended up in ER). Do not toughen it, rather demand pain and symptom management care, it helps so much, and those doctors are usually very empathetic and give you time, unlike oncologists whom I found for the most part too cold and robotic. Did they manage your anemia?

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Hi Rosie 

I'm sorry to hear your struggling with the side effects of treatment I did as well but I took everything they offered me to make it more bearable and it did get better,I ended up with having blood because of anemia and the chemotherapy tablets were worse than the infusion but I took all the pain relief they offered and it did help I stopped them when I no longer needed it especially the morphine I hated that but needed it for my esophagus and swallowing, 

Stay strong and positive and you will get through this my thoughts and prayers are with you hopefully you will start to feel better soon, goodluck with everything Take care Justin x 

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Hi Rossie,

Hang in there. I had carboplatin + paclitaxel in the past and I can relate what you are going through right now. Just like what Justin said, the side effects will become more bearable. I hope eventually you'll feel better not just from the side effects but also from the cancer symptoms which what happened to me.

Unfortunately for me, this chemo regime didn't last long as my cancer suddenly grow afterwards. I hope this drugs will be your last battle against cancer.

Hang in there Rossie

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17 hours ago, LouT said:

Rosie,

I'm glad to hear that your oncologist made the change for you.  Sorry to hear about the side-effects as they must be very distressing.  Add on top of it all taking care of a 4-year old and you surely have some challenges.  You sound strong even when you may not feel it.  I've not experienced it, but followed many other survivors here who have gone through chemo and am always in awe of their strength and determination as they meet the challenge.  I believe you are such a person.  I do want to remind you though that any of your symptoms should be reported to your oncologist as there are many ways to reduce some of the side-effects.  Others have also added a palliative care professional to their team to great benefit during difficult therapies.  If you begin to suffer too much please check into that.

Please keep us updated on your progress and ask any questions that may come to mind.

Lou

Thank you Lou for your encouraging words. I have an appointment tomorrow with my oncologist and I’ll let him know about my side effects. You gave me a good idea about palliative care. I’ll be bringing it up on my appointment as well. I just appreciate your continued support.

Rosie

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12 hours ago, LilyMir said:

Hi Rosie, life is not fair, isn't it? I also have a little boy who needs his mom and the past year saw me undergo tragic diagnosis, lobectomy, chemo and now targeted therapy. None of it was easy in any way. I recommend  you do not deprive yourself from medications that help with pain and symptoms. I was like that at first but gradually realized that I need to control pain if I am to have any reasonably good time with my kid and family so I took the strong pain meds when needed. Drink lots of fluids (electrolytes are important too) and even ask for more IV hydration before and after chemo if you feel you need it (my dehydration was so bad after my first chemo infusion I ended up in ER). Do not toughen it, rather demand pain and symptom management care, it helps so much, and those doctors are usually very empathetic and give you time, unlike oncologists whom I found for the most part too cold and robotic. Did they manage your anemia?

Hi Lily,

Thank you so much for all the helpful tips. It’s cool to meet someone who’s also got a little one while going through the cancer battle. How are you holding up taking care of your little boy?  I was hospitalized too for five days this first week of November for the side effects of the inmunotherapy.
 

At the hospital, my electrolytes were replaced, they gave me blood infusions to treat the anemia, and that’s where I also had my first infusion. I’m drinking as much water as I can. The pain meds I was prescribed were morphine and oxycodone, however the pharmacist said I couldn’t drive while taking them so I only use it at night. So it’s just dealing with the pain during the day. I did find one of my old tubs of pain relief balms similar to tiger balm and it’s helping a bit. My friend is suggesting cbd oil, there’s topical and ones you could ingest… I guess they’re worth a try.

And you’re so right about how doctors at the hospital are more empathetic vs. oncologists, ‘cause it was the internist at the hospital who prescribed me the after chemo pain and nausea meds I needed. My oncologist mentioned to the pulmonologist that I was “incurable,” and the pulmonologist relayed it to me. It scared me to hear that. I asked my oncologist what that meant, did it mean I was terminal? And he said this before the chemo even started. So I kinda begged him not to give up on me, that I needed a doctor who was on my corner like a coach to my cancer boxer self. I told him that I’m going to fight this with all the strength I have, cause I have a little girl I wanted to see grow up. 
 

So I don’t know where you are in your journey, but I just wanna encourage you to stay strong. Girl, our babies need us to be there for them. We can do this.

Rosie

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12 hours ago, Justin1970 said:

Hi Rosie 

I'm sorry to hear your struggling with the side effects of treatment I did as well but I took everything they offered me to make it more bearable and it did get better,I ended up with having blood because of anemia and the chemotherapy tablets were worse than the infusion but I took all the pain relief they offered and it did help I stopped them when I no longer needed it especially the morphine I hated that but needed it for my esophagus and swallowing, 

Stay strong and positive and you will get through this my thoughts and prayers are with you hopefully you will start to feel better soon, goodluck with everything Take care Justin x 

Thank you so much Justin for your prayers and encouraging words. I agree with you about pain meds. I also hated taking morphine, the oxy really helps it’s just not something I can take ‘cause it makes me drowsy when I have to drive and run errands as well as take and pick my daughter up from school. I’m take iron supplements for the anemia and am drinking as much water as I can. I’m glad you got through your chemo treatment, and feeling better. I just can’t wait to finish mine cause it is definitely a battle.

Rosie

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5 hours ago, Darius said:

Hi Rossie,

Hang in there. I had carboplatin + paclitaxel in the past and I can relate what you are going through right now. Just like what Justin said, the side effects will become more bearable. I hope eventually you'll feel better not just from the side effects but also from the cancer symptoms which what happened to me.

Unfortunately for me, this chemo regime didn't last long as my cancer suddenly grow afterwards. I hope this drugs will be your last battle against cancer.

Hang in there Rossie


Hi Darius, 

Thank you so much for your positive words. I hope it is really as you say that the side effects do get better. I’m hoping too that this would be the last battle I have to go through. How is your journey going so far? I’m so grateful we have this online community where we could connect with and support each other.  All the best ~ Rosie

 

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Rosie, there are other pain meds besides oxy and morphine. I can't tolerate either of them, so my palliative care doctor prescribed methadone first, and she switched me to a Fentanyl patch when I went on Tagrisso. I'm happy to give you my palliative care doctor's contact info, I will send it in a private message. She has privileges at the big Palomar Hospital in Escondido. 

My husband is finding that CBD oil helps with his painful hip that needs replacement. I'll get the specifics to you also. 

I'm not sure what oncologist you go to, but if you ever want to make a switch or need a second opinion, there are a couple of names I could give you. 

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Oh Rosie, I am so sad to hear that the immunotherapy did not work for you. This is just one more of so many awful things I hate about cancer – it is so damn unpredictable! Sometimes I feel like a lot of our treatments are just trial and error. Since I had combination chemotherapy and immunotherapy, I honestly don’t know which contributed the most to my tumor shrinkage. Have they said anything about doing radiation therapy? It seems like a lot of people do that simultaneously with chemo and have good results. I know there are a lot of factors that go into these treatment decisions that I do not understand, but just throwing that out there.

That must have been scary and awful for you to be in the hospital away from your daughter. But you got through it! And I will send many prayers for you for the strength to get through this chemotherapy and for it to be successful! I’m sorry you are having such a tough time with it. I had a hard time with nausea during my chemo, but fortunately did not have much pain. It sounds like Judy has some helpful recommendations for you in the post above. 

Many prayers to you, Rosie! Hang in there – I hope things get better soon!

June

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I am really sorry immuno made things worse for you Rosie. Did they do biomarker testing to check for actionable mutations? Are you being seen by a lung cancer specialist or a general oncologist? It makes my blood boil when heartless doctors tell their patients they are incurable or terminal from the get go. Can you get a second opinion? You should not be begging your doctors to care about you, they sound terrible at being human beings...

I am still so raw when it comes to my diagnosis and the fact that my boy is decades away from being a grown up man. One of the things I did that was helpful to me may surprise you: My husband and I made our wills, including guardians etc. Though many find this morbid, it gave me some control since most other things I had not much control over. After that was done, I started training myself to think of the now and here. I often fail, and occasionally break down sobbing, but I somehow always rebound. Every night when I tuck my kid in bed, I feel such sadness and worry for the future but push myself immediately to make loving memories. We tickle, hug, sing, tell stories and talk about our day. I often cry after he sleeps but then push myself out of the ditch and revert to hope. It is so tough, I know, but despair is not a good state to be in alone, let alone with a kid at home.

My doctors prescribed me Tramadol for pain. It was quite helpful. I did not drive during that period though so that may be an issue if you have to drive. Are you able to organize help your can receive from others to reduce your need to drive if that is at all possible so you can have pain meds that help you live more enjoyable life?

Please stay strong and positive but seek better care if you do not like your doctors or you feel they are shortchanging you! Life is precious especially with a child still needing their mommy so keep up the fight. Keep us posted, I hope things stabilize soon.

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Rosie,

I've been following your dialogue with other members. All have given superb suggestions about treatment and side effects. Like Lily, I also used Tramadol when I had adverse reactions with other narcotic pain meds with good results.

You mentioned your doctors pronounced your cancer incurable. And in a technical sense, they are right. Lung cancer is rarely cured; it is controlled. Mine has been "controlled" for so long now I have enjoyed more than 18 years of no evidence of disease. My medical oncologist pronounced me "cured" about 2 years ago, but I think he did so because he was retiring from practice and wanted to go our with a win. Here is some insight into what treatment outcomes mean in our disease. This information was provided by my medical oncologist, and I've found it helpful to explain what all these outcome characterizing words mean.

Advanced stage lung cancer is indeed difficult to eradicate because it has a nasty tendency to recur after successful treatment. That was my problem suffering 5 recurrences after treatment. The outcome term most of us pray for is no evidence of disease or NED. It means a radiologist can see nothing of interest on a scan, no tumors or nodules. It also indicates the course of treatment that produced NED was (is) successful. It does not, unfortunately, mean the disease won't return.

There are two ways to consider NED: a repeating hell or an opportunity to enjoy life. I spent my early NED years in contemplative misery worrying about recurrence and death and wasted a lot of time fretting about something I had no control over. I'd forgotten that none of us know when life will end and worrying about it is a grand waste of time.

You have the world to live for and living in a NED world can be grand indeed. Your attitude is something you can control, and you can choose to enjoy the life you have and live it in high style with your family soaking up love and joy. I wish you peace and joy and the happiest of Thanksgiving and Christmas surrounded by the love of your family.

Stay the course.

Tom

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If someone were to say I was terminal, I would feel like I’d been written off. I would also secretly toy with the idea of finding a hitman, but would settle for being angry. How dare that doctor sound so dismissive! Perhaps you’d consider finding an oncologist who would take a slightly different tack? The pulmonologist might be able to recommend someone, or perhaps you’re near a larger cancer center? You deserve better than to beg your own doctor to believe in your prospects. Please keep us posted. 

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Here in San Diego we have world-class lung cancer care. I've sent Rosie some contacts by private message.

I agree with Karen about use of the word "terminal". I'm fact, when I was diagnosed, my primary doctor said that lung cancer isn't a death sentence anymore. And my oncologist is such a great cheerleader that I've never felt like he'd just give up on me. 

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