Living with the fear of chemo

[Livingnow]

I was diagnosed in September with ling cancer in Sept Sage 2 B. Had part of left ling removed the surgery was hard. Then my cancer Dr said if you think the surgery was bad wait till you start chemo. Everything i read tells you all the side effects to the point i am more afarid of chemo then the cancer.

[lizzy-9]

Chemo is hard I went a year with it. But you will be all right just eat anything you can get a chance to

[scifiknitter Blogger]

Living now,

Wow, I am surprised that your doctor said something so insensitive and anxiety provoking to you!

I haven't yet had chemo myself. After reading other patient accounts and talking with others, I've learned that there is a wide range of response to chemo and some people handle it well. Also comfort care has advanced a lot.

Congratulations on being diagnosed early enough that you can be treated with curative intent! Keep your eye on the prize. And consider finding a new doctor if this one keeps provoking your anxiety. If you can, I would talk with him/her about how that comment made you feel.

Anita

[dmacdo9]

stay hydrated , if you have trouble ,ask your doctor for an Iv, that is what kept me going, McDonald milkshakes also helped , but hydration is the key. side effects are handled with anti nausea drug . Zofram and compazine , I liked the compazine the best,

[gibdonnalee Community Superhero in reply to dmacdo9]

Dmacso9. Hi, when you say IV your talking about at the cancer center? I also was constantly dehydrated, had to get IV all the time, but it did the trick.

[dmacdo9 in reply to gibdonnalee]

gibdonnalee, I would go back after infusions to be hydrated through intravenous, and if it was a sat and I needed it ,I would be sent to my local hospital,

[lizzy-9]

I don't know who your Dr is don't won't

One like that

[Hidden]

@Livingnow hi i'm Jo please don't be afraid that chemo is going to help you. They have alot of medicines they give you now. They give you nausea meds so you don't get sick to your stomach,bynadrl to help relax you. you'll be fine if you get scared write me and i'll try to make things better so your not scared. okay remember my names Jo Taylor

[Livingnow in reply to Hidden]

Jo thanks for your response. I am a very strong person normally but that comment rocked me. I go back Thursday for my second round of chemo,the hardest for me now is the massive hair loss. I know its normal but hit me emotionally more then I would have thought.

[ThePurplePlace]

Dear Sage,

I am saddened and sorry to hear that your doctor made such a horrible comment? I'd be long gone from that office and be looking for a new Oncolgist, had that happened to me. This is hard battle, you'll want to have a team that is very compassionate -- honest and truthful too.

Chemo today is MUCH different that it was years back and they continue to make strides in alleviating the side effects and how they can be treated. I really did not find it to be all that bad and I'm so grateful that the treaments worked well. I'm battling Stage IV NSCLC and getting close to my second year since my diagnosis and I'm doing well! Something, I honestly id not think would happen when I was first diagnosed.

Please try to ignore that comment and PLEASE consider getting a second opinion. Chemo truly is much easier than most people think and most patient do very well and I hope you will too.....

Lisa

[Jenniferroseolson in reply to ThePurplePlace]

Similarly, I was stage 4 nsclc diagnosed in April 2015. I've had 18 months of chemo (every 3 weeks or sometimes 4). I have a terrific quality of life with the exception of 3 difficult days during chemo week when I just feel very yucky and sleep a lot. Decadron (steroid), zofran for nausea, and allowing myself to sleep (for the fatigue) make it manageable. I'm 45 years young. Yes, it's difficult, but truly here's my pattern: blood work, oncology appointment, chemo treatment on Day 1. Day 2 feel ok. Day 3 tired and need a multi hour nap and get up in time to get kids from school and do all the parenting stuff. Day 4 in bed all day. Day 5 big nap and hang around the house doing not too much. Day 6 driving to all day volleyball tournament or whatever my life calls for. Early chemotherapy treatments are harder as I was still recovering from hospitalization/chest tube/Pleuradisis. You can do this! Communicate with nurses and docs, ask questions and insist on best care. Best wishes to you!

[Denzie Moderator Volunteer]

Fire that dr. I'm serious. You want an oncologist who believes that he can help you manage your disease and the side effects so that you can get back to good quality of life. If yours doesn't then s/he is not current on the latest.

Six years ago I was given the strongest, most aggressive chemo combination out there I was given an anti nausea med called emend. It has made a huge difference in the way the body deals with chemo. Chemo really is not the same torture it was years ago.

[Rivs]

I had a Lobectomy and chemo. I don't think the chemowas as bad as the surgery but I believe it's the type of chemo you get and your health before you start treatment.

[PegD]

I agree with what everyone has said. I was not a candidate for surgery but just finished my 4th round of Carbo/Alimta and will hopefully start Alimta only next month. Chemo is doable! Keep your focus on healing and not on the side effects.

[klmcmanus in reply to PegD]

Hi PegD!

If you don't mind my asking, what stage was your cancer? I was diagnosed with adenocarcinoma on Dec 12th. They have staged me at a 2a--which was a relief. I am also not a candidate for surgery because the tumor lays too close to my windpipe and they would end up having to take the entire lung. My function is too poor to withstand that. I am going today to get a lifeport to start Alimta/Carbo, as well. I will also be getting radiation. How was/is the chemo? The thought frightens me but, I want this cancer gone! Hope all goes well for you!

[Jenniferroseolson in reply to klmcmanus]

I also had carbo/alimta for max number of treatments at time of diagnosis. Now only alimta. See my reply above about what that looks like for me

[klmcmanus in reply to Jenniferroseolson]

I read it--very informative. Awesome information. I am 50 yrs young with 2 adult kids and 1 10yo and 1 6yo. Sounds like the first week will be the worst then? Did you also have radiation?

[Jenniferroseolson in reply to klmcmanus]

I did not have radiation. I did have mets spread to brain and had stereotactic radiosurgery (radiation) on two lesions there but that's a whole different thing.

[PegD in reply to klmcmanus]

I was diagnosed Stage IV because of progression to the pleura and lymph node involvement. R lung only. Good that you are getting a port! I got mine one week ago and wish I had gotten it sooner. Take the meds as directed and you will do fine. I found the baking soda/salt mouth rinse helpful as well as drinking ginger tea and eating the occasional ginger chew. If you live in a state where you can get CBD that has helped as well. Fear intensifies not only the emotional but physical symptoms. I suggest finding a meditation practice or prayer that helps bring you back into balance, I do this every day. Wishing you all the best. You can do this!

[Steph60]

I was diagnosed at stage 1B had my upper right lobe removed and then 4 rounds of chemo. I did a lot of searching on the web to see if I should do chemo- the most light bulb moment for me was when I read that if I did not do chemo when I was at stage 1B, if the cancer returned it would be stage 4. My oncologist confirmed this, I did chemo. While it was not a fun experience there are all sorts of drugs that make it as good as it can be. Your oncologist can give you meds for the nausea, and have you buy meds for the bone aches and possible diarrhea. My worst side effect was fatigue which there is no med for-the sofa and I become good friends. I never wanted to think if my cancer returned "what if" I did chemo would it have returned. Instead I did it and always know I did everything I can to fight the possible return of my cancer. You are stronger than you know- my mantra was "if someone else can go through this, then so can I!" Hope this helps, but always do what is right for you. Sending you a big hug.

Stephanie

[Angels0128 in reply to Steph60]

Thank you Steph60 I am going to be starting chemo I the nect week; not for sure what kind of chemo. I already had a lobectumy of my right lung and then they found cancer cells in three limp nodes so therefore I am now stage 2B. Just wanted to say thank you for your encouraging story. God bless.

Thank you DLL

[Steph60 in reply to Angels0128]

Sending you the most positive thoughts that chemo goes well for you. Keep me updated on how it goes. Sending you a big hug. And just remember if we all could make it through chemo you can to!!

[FtB_Peggy]

Livingnow,

Glad you are here with us. The folks in this community are happy to walk with you on this journey. Please seriously consider getting a second opinion and think about finding a doctor, and medical team, sensitive to you and your situation. You deserve compassion.

If you want, take a look at our website (freetobreathe.org), you'll find information on second opinions, and lots of other good resources.

Welcome!

[gdeanbates]

I saw previous replies advising you to find a new doctor. I agree with them and would go running out of his/her door. I was diagnosed in October 2014 with stage 4 adenocarcinoma. It had spread to my brain and my lymph nodes. I had 3 weeks of daily radiation to address the brain. I took a week off to rest from the radiation treatments and then started on chemo. I still have the same oncologist and have open dialogue with him during every visit. I discuss any side effects that I may have had and he addresses it by giving additional drugs during the infusion or prescribes something for me to take at home. They are proactive and give me anti nausea and other drugs to help with the side effects before infusing the chemo. I was on various chemo drugs during the first year, followed by one year on Opdivo. In September 2015, I went back on chemo.

I feel my worst when my blood counts take a dive. Normally, they are able to help by giving me shots, but I did have to get a blood transfusion of two units one time.

Also, I think different people handle chemo differently. There are just too many variables that come into play. Generally, I think those that are otherwise healthy do much better than those with other health issues.

I hope my input helps you or others that may be going through the same thing.

[anmcdonald]

I know how you feel. The chemo was very hard on me. I spent 43 nights in the hospital over a three month period. But here I am today with my cancer at a stable stage and doing just about everything I want to do.

[stutheit]

I'm with you chemo scarce me I have had a wedge removed on right lung and cyber knife on left lung and now they just found more tumor in myright lung and they are talking chemo the fear has set in all this since May 2016 thanks and good luck

[Angels0128]

I was diagnosed with lung cancer and was told the tumor was localized in the upper right lung. January 3rd I had a vast lobectumy removed 1/3 of my lobe and eight limp nodes. Three out the eight showed cancer cells and now I have to have chemo. I go to the cancer Doctor this Friday to see what treatment plan I will be doing. I have heard people talking about 3, 4 ect. Rounds of chemo. Can someone explain what they mean when they say rounds is this the frequency or what.

[FtB_Peggy]

Survive,

A round is when you have your chemo, then a rest before starting the next round. A round can be 1 treatment or 6 spread out...it all depends, but you have a "rest" period in between each round. Does that make sense? Good luck today! Please let us know how it goes!!!

Need to clarify, the "1 treatment or 6" I mentioned were just examples, it can be given lots of different ways....