Chemo Questions

[Shelkay1]

I'm scheduled for a left lower lobectomy in 2 weeks; followed by chemo. I think I'm more scared of chemo then the surgery. My doc says 4-5 rounds, but nothing is certain until after pathology report following the lobectomy.

What do I need to know & what questions should I be asking about chemo. Does everyone loose their hair? How far apart are treatments? Do some make you a lot sicker than others? Are there some that have better track records for no-reoccurance then others?How do they decide what to use?

[Kleo]

Hi Shelkay1,

I think it's usually a standard treatment guideline they follow that determines which chemo they give. I didn't have surgery so I'm not sure what the protocol would be for post surgery chemo. Someone else here will likely know. But I did have 4 rounds of platinum based chemo. Three of the rounds were Cisplatin and Alimta and one round of Carboplatin and Alimta. I had it once every 3 weeks. I didn't lose my hair. Bought myself a wig and head wraps thinking I would- but I didn't end up losing it!  I found the chemo was pretty predictable. I would feel crappy for like 3 or 4 days, then I felt fine the rest of the time. So really I just planned my errands and things around the bad days.  Everyone seems to react differently to it though. 

Once you know for sure if you'll be taking it, and if so- which chemo they intend to use, someone will be able to give ya more info I'm sure.  

Try not to worry! Easier said than done I know. 😫

[Robert Macaulay]

I had eight rounds of Chemo first six was with radiation the last two were full dose and lost all my hair  lol, now growing back after eight weeks.

There are other side effects all different for each individual but they are out there for sure.

Bob

[Judy M.]

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

[Susan Cornett]

We all react to chemo differently.  Drugs that didn't bother me sent others to bed.  I had four rounds of Cisplatin and Alimta following my lobectomy. My biggest issue during that round of chemo was nausea and it was well controlled.  I also had 8 rounds of Carboplatin and Taxol.  I had no nausea, but I lost all of my hair.  Like most of us starting chemo, I was a little apprehensive to lose my hair, but it was fine.  I lost it in early July and it started growing back within just a few weeks.    

The number and frequency of chemo sessions will depend on several factors so that should be determined following your lobectomy.  For example, during my first round, I had four sessions with 3 weeks between treatment.  For my second round, I had 6 weekly treatments, then a 3 week break, and then 2 more treatments 3 weeks apart.  

Once you know what drugs you'll receive, check out www.chemocare.com - it's a wonderful resource for drugs and side effects.  The site is run by The Cleveland Clinic. You should have some idea of possible side effects and you can work with your medical team to minimize them as much as possible.  

[Tom Galli]

Shelkay1,

Here is my primer for chemotherapy.  I hope your treatments go well.

Stay the course.

Tom

[Roz]

Shelkay 1,

I agree with what everyone else has said. Seems like we all react to chemo differently so you are better off not expecting to react in a particular way. Your oncologist should tell you what to expect in terms of side effects. You really won't know until your body tells you. Certain chemo drugs do result in hair loss (such as Taxol). I had my surgeries prior to chemo. Keep updating us on what the results are after the surgery. That will most likely determine next steps and which chemo drugs they will suggest.

Best of luck with your surgery!

 

Ro

[Roz]

BTW, my first surgery was removal of my left lower lobe using the VATS surgery. I was out of the hospital in 3 days.

 

Sending you my best!!

 

Ro

[Shelkay1]

Thanks everyone for answering some of my questions. I looks like I'll really not know a lot more till I know exactly what drugs they plan on using & how my body reacts to them. One thing I am learning is about a "round",  I thought each round was a treatment; now I understanding each round has multiple treatments. I've also learned to tell them I want a port; I have terrible veins. My nervousness about the upcoming chemo has not abated, but knowing I've got support from you all who've been there before me is a huge help. I meet with the surgeon tomorrow to make sure my most recent infection is cleared up & surgery is 9/14.

Shelby

[Susan Cornett]

Definitely get a port.  I didn't have a port during my first round and it was awful.  One chemo took 7 sticks to get started.  I haven't used my port since last year, but I'm not getting rid of for a while.  We use it for my scans because I have terrible veins, too.

[LexieCat]

Deleting my post in response to a deleted post, lol.

[Shelkay1]

I get my port on Monday & chemo of the Cisplatin/Alimta cocktail starts on the 25th. My chemo doctor sent a pre-authorization request to my insurance company for Neulasta to treat neutropenia & it was rejected. How often is neutropenia a problem or is this something my doctor will fight for. How expensive if I pay out of pocket. I'm thinking of going back to work & really concerned about getting exposed to viruses & getting sick. I already seem to catch everything that goes around.

 

[LexieCat]

Wow, that's one expensive drug!  Here's a fairly recent article about it, and a related drug (Neupogen) as an alternative: https://www.verywellhealth.com/neulasta-vs-neupogen-for-chemotherapy-treatment-430223.

[BridgetO]

Hi Shelkay,

Prior to having lung cancer (which was stage 1a and didn't require chemo), I had a different cancer (Stage 3) for which I had concurrent cispltatin and radiation, followed by additional chemo with carboplatin and taxoterre (a relative of taxol). After my first round of the carbo/taxo, I developed a slight fever and called my doctor immediately as instructed and was sent to the ER.  Tests showed my neutrophils had gone down to zero, but they couldn't find any source of infection.  I  had no symptoms other than the fever. Nevertheless, I was put on 2 antibiotics. For my remaining rounds of chemo, I had neupogen. I had to give myself a series of injections on days following the chemo. My neutrophils didn't crash again.

I've heard that some oncologists prescribe neupogen or neulasta routinely with chemo, but mine didn't so I didn't get it until I had a problem. Maybe your insurance will pay for it for subsequent rounds if you develop neutropenia. 

The most important thing is that if you develop a fever at all during chemo, you get care immediately, because with low neutrophils, fever can be the only sign of infection and since your immune system can't fight it off, it can overwhelm your body really fast. Also, I had to follow neutropenic precautions (which I'm sure you can find on line) that included eliminating any possible source of infection including raw fruits and vegs, undercooked meat (no sushi!) and some other things that I can't remember now.

So I don't know how common neutropenia is, but I do know that it can be dealt with.

Bridget O

[Tom Galli]

Shelkay,

It has been my experience that insurance companies generally withhold approval on side effect medication (especially very expensive medication) till test results document a need. 

During my adjuvant chemo, a once per week infusion of reduced potency, accompanying conventional radiation I didn’t have a drop in blood counts to warrant Neulasta or Procrit. After a recurrence and full strength infusions, my oncology nurse phoned in the low counts and received the medication minutes after the report to the insurance company. From then on, no approval was necessary. 

Chemo affects each of us differently. So you may not need Neulasta. I hope not because while it boosts white counts it is a painful injection and has a nasty side effect of causing bone pain. 

If going back to work involves school ages children you are in for a rough time. If not, stay away from them and pick up surgical masks and wear them while waiting in doctors offices. Walk quickly away from anyone displaying cold or flu symptoms. 

Stay the course. 

Tom

[BridgetO]

I know many people have bone pain from Neulasta and Neupogen. I had no pain and no other side effects from Neupogen. It wasn't hard to give myself the shots-- small needle, in the belly. i think rather like diabetics using insulin.

[Shelkay1]

Thanks, my chemo doctor was cc'd on the rejection letter, I'll trust in whatever he does about it right now. LexieCat, you are so right about it being pricey; $5,00.00 - $7,00.00 per dose is crazy. This is my last day of blood thinner shots, so I guess I can give myself Neupogen if it becomes necessary. I work in the maintenance office of a large retirement community & am around people all day. Every cold, flu or stomach virus that goes around,  I seem to get it even with flu & pneumonia vaccines. The only kids I'm around are my 6 grandkids & everyone knows they have to stay away if they're sick.

Another question about all this - if I have the option of working during chemotherapy (& possibly radiation) should I? Pros and cons of each. 

[BridgetO]

I think there are a couple of questions. First, how you feel. Some people feel fine during treatment and others not so much. Second, what will you be exposing yourself to. Sounds like you tend to pick up germs where you work and this could be dangerous if your immune system is compromised. If you do  work,  condider a mask and a lot of hand sanitizer. I'm retired and didn't work during my treatment. When I was working I made a lot of home visits to adult group homes and foster homes and I found I could reduce the number of things I caught by carrying hand sanitizer and using it as soon as I left the home. 

[Shelkay1]

I have probably 6 days between now & the 25th, I could work 1/2 days but because of continued internal pain where lobe was, I am limited in how long I can stay vertical. I am large busted & the weight of my breast causes pressure on my chest & wearing a supportive bra is as bad or worse (I know this is NOT something Tom can relate to). So I even uncertain about returning Wednesday as planned. Masks & sanitizer are a definite if I do go back; the thought of steamed up glasses for the next 4-5 months sounds really fun.

[Kleo]

Everyone handles chemo so differently it's really hard to predict side effects! I had the full dose cisplatin and alimta. Personally I would not have been able to work the week after infusion. The second and third though I could probably have, but I just didn't think I should work during treatments and put myself at higher risk of infection. For me, it was just that first week that I felt pretty crappy. I never had to have the neulasta.

 

[Shelkay1]

Starting day 5 post 1st Cisplatin/Alimta infusion. 
I seem to be getting so many different things going on in my body right now; none totally leaving before another starts. Each on its own wouldn't be too bad to deal with, but the cumulative effects are really starting to wear me down right now. I guess that's the battle the chemo drugs are supposed to be doing to the cancer, but I wish it would leave the otherwise healthier parts of me alone. I was given steroids & anti-nausea drugs to fight some of the side effects of the chemo drugs, each of them coming with their own effects, I don't know for sure what is causing what, but I'm ready to be done with it. So far it's been headache, flushing, ringing in the ears, nausea, extreme gastric discomforts and major insomnia. I've been reading a lot in Chemo Care about the side effects & also on this chemo forum; but how do you all seem to handle it so well? Overall I consider myself pretty strong, but this is awful!

[Susan Cornett]

Shelkay1,

The insomnia is most likely a side effect of the steroids.  I had the same chemo cocktail you're having and I had similar effects.  I received chemo on Fridays and felt pretty good until Sundays. Sundays and Mondays were the worst, Tuesdays got better and by Wednesdays I was almost human.  I will tell you that 2 1/2 years later, I still have the ringing in the ears and I'm not sure it will ever go away.

Make sure you keep your oncologist/medical team in the loop on side effects.  There may be additional steps they can take to mitigate them.

[Laurel]

There is no doubt about it....chemo is a challenge. After my first infusion of chemo, I went through 5 weeks of pneumonia. After each infusion I would suffer from nausea. I took nausea meds as soon as I felt a twinge. I had ginger cookies, ginger ale, ginger candy drops, saltines and amazingly Gatorade fruit punch. There is no strong about this process. You do it because there is little choice. I didn't have major insomnia but a friend did. She said she psoft layed lots of games on her tablet. Sending soft hugs.

[Joy Marie]

Hi Shelkay.  My mom just finished her 1st of 4 infusions.  We just got back from seeing her doctor and he was amazed how well she got through it, ' like a champ,' he said.  What I know is aside from fatigue,  she had no side effects at all.  Mom took a gallon of ice chip water with her for all 3 infusion days.  That seemed to have flushed all the bad effects out of her.  She tried Ensure but said it tasted like Keopectate.  So water did wonders for her.    Best of luck!    Joy

[Tom Galli]

Shelkay,

Handling chemo side effects well?  That doesn't describe my experience.  I tolerated them but was a nightmare to be around -- just ask my wife!

Agree with Susan that the sleeplessness is likely due to steroids.  I've had the effect called "roid" rage.  I was awake for 24 hours straight while consuming everything edible in the house. The best advice I have is to chart the onset time in hours after infusion and start the side-effect medicine after the next round an hour or so before projected side effect onset.  That eliminated my nausea symptom almost completely.

Stay the course.

Tom