October 2013 Chemotherapy

I keep crying and thinking I can't do this again...just feel so bad. Sorr of out of it constantly, hungry but nauseaus whwn I rhink of eating anything specific...horriblr headache but borderline fever so can't take lots of tylenol. So down, so miserable...so sorry

Hello, I am new to this board, I having been reading all that I can for the last few weeks and finally feel up to joining in

I was wondering, has anyone gotten a red ichy rash at the site of the IV? I have this weird rash on the back of my hand right were I have my first chemo IV, and it showed up about 3/4 days after. My MO says that it is totally unrelated to chemo, but I just don't believe him. I have another appt tomorrow to check my white blood count, and I am going to have him look at it again, but I was just wondering if anyone else has had this problem? I really don't want to get a port since I am only having 4 treatments, but this rash driving me crazy!

thanks TeamKim, I also got a nasty rash on the back of my neck and the diaper rash. So I guess it must just be we have sensitive skin. I am using the Cortisine cream and the one on my neck is gone, but the hand one is taking alot longer but is getter better.

I think I will just not let them use the back of my hand next time.

I was told it is best for me to have a port as my treatment will be for 5 months.

welcome colliemom and spiritblessing. I have not had the official word yet on whether i can have chemo so i find the posts about how it is affecting others very helpful. I so often heard "It's fine. Don't worry" from people when it wasn't fine that finding reliable realistic information has been so wonderful. Although some of the stories of difficult to handle side effects are scary I am also learning that everyone is bearing up and handling it. Seeing the strength shown by these women makes me feel like I can do it too. It is a very difficult path we are all following and i am so grateful to the women who are sharing their struggles.

I hope you will join in. It is the most supportive community i have ever come across and it is really amazing to me that so many people are so giving when in the midst of a struggle.

SpiritBlessing,

Please keep in mind that although you may currently be reading a great deal about some women who are dealing very poorly with side effects, you will find this thread is more about encouragement, support and helping one another.

This forum offers all of us to be honest about what we are feeling, both physically and emotionally.  Chemo is tough; we all know that.  Some are hit harder than others.  But please always keep in mind that you are likely very well aware of all the SE’s that CAN happen, it in no way indicates that you will experience ANY of them. 

What can you expect? 

• Nausea – if that happens, call your MO or MO on call and get diff meds (easy as that!).  Or your MO may send you home with 2-3 different anti-nausea meds so if one does not work, you can move right on to the next for possible relief.
• Extreme flu like symptoms/bone pain – this is a tough one.  Claritan taken the day before the Neulasta injections and for 5 days after will oftentimes keep this SE from setting in.  Some women do not get relief for whatever reason.
• Fatigue – advice is easy, when you are tired, SLEEP.
• Hair Loss – everyone opts for their own way to deal with this and I’m sure if you haven’t decided yet, you’ll find many here willing to answer any questions you may have on how they arrived at their decisions,

Those are the 4 items you really need to keep in mind and be prepared to deal with.  Again, like my MO told me right before my first infusion:  “If you have a thought in your head about how you are feeling and wondering if you should be calling me, you should pick up the phone and call me.  We are here for you patients 24/7; call us and we can help with whatever comes up”.  Good advice; advice I took and was able to get relief from my suffering.

So you see, that’s what you can expect.  Anything else you read about side effects you COULD get, not that you will get. 

It’s important to know that we all have different reactions.  You may experience some of the other SE’s you’ve read about but don’t ponder them now.  If they happen, deal with them at the time.  Quite like living life….you can prepare, you can know what might happen, but you never know what will happen.  Look at chemo the same way, because that’s exactly what it is.

I hope in your continued participation in this thread.  You will read many, many times about positive experiences, great hints and tips to handle some of the side effects that might arise, but more than anything else, you will find encouragement and support from a large group of women who are going thru the same medical treatment you are for a terrible disease we never thought would touch us.  You will find that we are a very positive group of ladies, but there are times a large group has chemo on the same day and the SE’s they are experiencing may overshadow everything else currently being posted.  It’s just the rhythm of the thread….it’s not that it’s the essence of this thread.

I hope I’ve been able to put in perspective what you are currently reading and know that it is important for us to be able to vent our pain or discomfort and reach out for help from others who are also going thru the same thing.  And know that we will be here for you as well, in whatever comes up in your life that you wish to share or questions you may have, or just a shoulder to cry on – we are all here for each other and you will not be let down.

On a more personal note: It’s normal to be nervous.  I was among a small group that had no nerves going into this phase; a strange calm set over me a couple days before my original start date (which was 9/26 but was delayed until 10/24 for various reasons) and stayed with me right thru the first infusion.  I left the infusion center feeling exactly the same as I did when I arrived, exactly.  No side effects whatsoever.  Nausea began about 5 hours later but I didn’t recognize it for what it was.  I thought I had just way too much fluids in my system – but awoke 2 hours later feeling very sick to my stomach.  I never threw up so opted to ride it out but feared most that I could not eat (the mere thought made me sick!) Still felt very poorly the next day, called, MO on call phoned in 2 new prescriptions and told me to call him if neither worked and he would arrange an infusion be done at one of the local hospitals to get the nausua under control.  The meds he provided worked, I ate, I slept, and was most thankful for his help. 

Regarding ports – I was adamant I wouldn’t have one; didn’t want anyone cutting into my chest again.  As it turned out, my PET Scan was lighting up in my right nodes so I had to go in for another surgery to get one particular node removed so I told them to just put in the port.  It does make chemo easier, every medical professional will tell you so.  Having only had it accessed once, I can tell you it was MUCH easier and painless than having an IV in the hand or arm….and you feel nothing during infusion.  And you’ll have lots of blood draws, all of which can be taken thru the port.  It is a very personal decision….but I’m glad I opted to have one and think it made my first chemo much more tolerable than it would have been.

Hoping you stick with us.  You’ve stumbled upon a large group of very caring and supportive women who want to help others.  And, as you have found, we also reach out when we feel poorly so that others can help us along this journey. 

Hold tight to your faith!  Let those around you help!  And know we are here to support and encourage you should you want or need us!

furfriend- I am right there with u. I get sick thinking about AC treatment. I try not to think about it bc I think the anxiety is worse than it actually is

This all sucks honestly but for me I try to think one of the upsides for me. My mom comes and stays with me during my treatment weeks. She is 78 and I am one of her last kids (8 of us in total). This time has allowed me to spend more time with her which Is a blessing and time I don't think I would have had otherwise. My mom told me she often wonders why she is still here (my dad passed away at 54) and she said she now knows...to help me and my other sisters when we need her

relocatedtarheel

I have found 100% apple juice works really well for me. I am able to drink tons of water, but sometimes just need something with flavor. The apple juice quenches my thirst and has flavor.

Hi ladies, I am feeling much better today. Thanks for all your support and advice, this weekend was tough! I finally slept although only for 5 hours in the last 48-anyone else have ridiculous insomnia? I am assuming it is from the steroids. Anyone know how long you can feel the effects of the steroids for?

I shaved my head yesterday after weeks and weeks of saying I didn't care, but as I watched my hubby remove more and more hair I started to cry. It wasn't because my hair was gone, it's hopefully going to grow back nicer, but I cried because I look sick, I look like a cancer patient now. It's crazy how different I look compared to just a few months ago. I'm sure you can all relate.

For those of you with ports-are you able to sleep on your side? I have been stuck sleeping on my back since my diagnosis in July and it's driving me crazy. First it was because of the BMX, but then it became because of the port. Just wondering...

I got good news today! The MO/nurse finally let me know that I will NOT have to have the Neulasta shot at all during my 3 months of Taxol/Herceptin. PHEW! I didn't know how much if at all the Taxol affected wbc and neither infusion nurse could answer me last week.

The SEs from this last treatment I am quite sure are mostly from the shot on Wednesday. This is the first day I felt ok enough to even try driving! Really put me down for the count for several days.

So while I still (after 2 months) have a year of treatment left at least I only have one more Neulasta shot!

Tipps04

I have mostly stuck with ice water & ginger ale. And GatorAde occasionally. Juices just added to the mouth sores. Is that a SE you have?

Colliemom and Headeast - I got a very uncomfortable rash about 15 days from 2nd tx. Dr. did not think it was chemo related but likely picked up somewhere else in my immunocompromised state. I tried a bunch of over the counter methods but was in so much discomfort, finally got to a dermatologist who prescribed Allegra, a fluocinoninde cream and hydroxyzine tablets. It cleared up for the 3rd treatment last week, but made another appearance today. The meds are keeping it from really bothering me, but are also contributing to my fatigue.

As for bone pain, I would highly recommend managing it with whatever pain meds you have. The ibuprofen and tylenol did nothing for me the first time. I took the Percocet every night for relief. And the Lorazipem helped me sleep like a baby. Same the second time around. THis last time, I started taking ibuprofen the day after Neulasta and have not had any problems. Nor have I had to take any pain meds.

It is just so important to hydrate to get rid of all this poison inside through you. Honestly, the first time I was 16 days of feeling terrible. The 2nd time was much more manageable. I'm 5 days from my 3rd treatment now and feel pretty tired and icky, but I know it will improve in a few days. Stay strong. You can get through this!!

Well said Lili, I agree with you a hundred percent. I often wonder what I would do without these discussion boards. They have enriched my life tremendously. And it is like holding on to a hundred hands of support..

Hang in there everyone we will get through this.

How is everyone this evening? Hopefully nausea is improving for those of you who are dealing with it. I don't know if it's just me but I have had no nausea problems,( knock on wood), day 4 #2 and I would recommend that you take your nausea meds regardless of whether you think you need it. My MO said to take for 3 days around the clock after treatment and it has worked for me. I didn't really wake up in the middle of the night to take them but if I woke up and it was time I would take it. Good luck, back to work for me tomorrow!

Julie