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Starting Chemo any suggestions on how to cope welcome

ozchrissy's picture
ozchrissy
Posts: 22
Joined: Mar 2012

At last my chemo is scheduled to start next Thursday. During the work up in preparation for my surgery there were a number of problems discovered with my heart. I had a 90% blockage in my coronary artery, and my biventricular-pacer/icd which I have had for 5 years as a result of cardiomyopathy needed replacement. These procedures were addressed very quickly and a stent was placed. However, we had to wait for the stent to settle into my artery before they could do anything else, as some of the drugs will affect my heart and arteries. Finally, (I was diagnosed on the 30/3/2012), I am now beginning my Cancer treatment. I do not want to know how this wait may have affected the spread of my cancer, as there is nothing that could have been done about it, so it is now full throttle ahead with the chemo. At diagnosis there was no spread at all and my tumor was T2-3. However my cancer is adenocarcinoma of the gastric cardia and is poorly differntiated.

I am being put on 5-FU via a PICC with a pump bottle for the whole 9 weeks. I am having Carboplatin (as a substitute for Cisplatin due to heart concerns) and Epirubicin. I will be having Epirubicin, Carboplatin intravenously every three weeks. I start this protocol next Thursday the 31st May. Almost 2 months since diagnosis, which considering they had to wait 5 weeks for the stent to settle, is a pretty good achievement on behalf of my doctors.

I have taken the advice of the Doctors and I have a good supply of moisturizer, bought a new thermometer, lip balm and the salt for doing my 4 daily mouth washes. I am also taking a liver tonic to help my liver cope. I am currently building up my strength, as when the pain is controlled I am able to eat pretty normally. No appetite, but I am forcing myself to eat to keep my strength up. The nausea pills will be given to me by the oncology unit, and each time I get the Epirubicin, Carboplatin I will also have anit-nausea drugs intravenously.

I am seeing a dietitian next week, but have already been supplementing my meals with hospital strength meal supplement drinks with full cream milk. I also put a raw egg in as well as flavoring so I am enjoying a pretty rich milk shake twice a day. I have organized home help and have a bevvy of volunteers to look after me when I require them. I have used an antibacterial soap for years now, and use antibacterial bench sprays and have the hand cleaning gell everywhere. I really would like to remain as independent as I can during this time, but will not hesitate to ask for help if I need it.

Another query that I have is radiotherapy. My oncologist was of the opinion that it could mess up my esophagus and become a mess. My surgeon has referred me to the radiotherapy unit as well. But honetly I really don't want to go through radiotherapy. I was supposed to see them on the same day I saw the oncologist, but cancelled the appointment. I have another one in June, but really would like to keep the radiotherapy until after the surgery. The surgeon will be cutting out half my stomach and 10cm of my esophagus, so shouldn't he get the lot then????? Any experience of this would be wonderful. l can't have MRI's because of my heart device, and I think the the radiotherapy would be the same. Will of course keep my appointment in June, but really don't want to go down that track.

Is there any practical advice that anyone can offer me so that I can be a bit more prepared. I know I won't know how I am going to react, but getting prepared is helping me to cope with all this, and hopefully should make this chemo journey a bit easier.

Ginny_B's picture
Ginny_B
Posts: 537
Joined: Sep 2011

You are such a trooper! Mom was on 5FU via PICC. Don't wet the PICC line. Get yourself lots of Saran Wrap and duct tape (or any tape that will secure the saran wrap keeps you dry. That was the part my mom hated. If you can get a shower head that is hand-held, that will help.

You keep on fighting the good fight and check in regularly so we can follow your successes!

ozchrissy's picture
ozchrissy
Posts: 22
Joined: Mar 2012

Thanks Ginny, I presume that Saran Wrap is the same a Glad Wrap, a plastic that is put over food. We probably have different names for them. I am in Australia.

Sherri, I do have problems with fluid buildup, that is one of the reasons why I wasn't put on cisplatin because of the need for extra hydration, but I spoke to the dietitian today and they are going to work out another fluid meal supplement/electrolyte replacement for me also. I always have a bottle of water next to me, and I am constantly aware of my fluid stuff. My new device even comes with a remote monitoring system, and part of that has a set of scales that record my weight daily, so a track can be kept on my fluid levels. My device also monitors the amount of fluid around my heart and lungs, and a warning is sent to my cardiologist if this is present. This wasn't done for the cancer treatment, but for my heart, but looks like it will be a good monitoring system for me. With my heart condition they will be monitoring me closely for fluid levels etc. Also I am very prone to oral thrush, have always had to have the tube of canesten every time I am prescribed antibiotics. I have a bottle of the oral thrush medicine always in my cupboard, and do intend to religiously do the mouth cleaning routine.

Thank you so much for your advice, I will definitely be taking it on board, and asking the nurses about the extra nausea drugs as well.

JReed's picture
JReed
Posts: 463
Joined: Nov 2011

Hi There!

It appears that you have things pretty well lined up and are as prepared as you can be. We are sending you a ton of positive mojo to help things go well for you.

Don had carbo and taxol chemo also. Hydration was key to making him not so sick - on week two the oncologist started Don on a bag of hydration following chemo on Wednesdays and then again on Fridays. I hope they can come up with something for you to help you stay hydrated and yet keep the fluid from building up.

In Don's case, we were told by the chemo oncologist that radiation would be the 'work horse' in his treatment and the chemo would be something like a 'booster rocket'. After surgery and from Don's pathology report, we were told that he did not have a good response to treatment. The radiation seemed to do more harm than the chemo from what they told us. Also, Don is HER2 positive but did not participate in a clinical trial where herceptin would have been given along with the traditional chemo therapies. Hindsight is always better than foresight - so naturally, I wonder if that would have made a difference in Don's case. Have you been tested for HER2?

It takes a few days to get setup for radiation, so if you are at all considering this, you will want to get in to meet the radiation oncologist to see what all that entails. They have to put little freckle like marks on you and then the physicists have to work out all the angles and the target area for the radiation. I did not realize what all went into getting ready for radiation and was a taken aback when we found out that was going to take a few more days (we were anxious to get started with treatment because we had a substantial delay also - from Nov 21 2011 until Jan 4 2012 - this is also why he did not do the clinical trial - long story on that one, but I was furious!)

Looking back, Don had very few side affects from the treatment - some people really struggle with the treatment. I think the affects from chemo pop up quickly and the affects from the radiation are cumulative and take a while to show up. For example, it was about 5-6 weeks after Don's surgery that he started peeling on his belly like you would with a sunburn.

Sending you all the mojo we can via the internet and prayers.

Hugs and FEC,
Judy

ebawa
Posts: 37
Joined: May 2012

I recommend getting some Biotene mouthwash to treat mouth sores. Someone recommended it to me and it really helped. They also make chewing gum which is good.

Best of Luck,

Ebawa

sandy1943's picture
sandy1943
Posts: 883
Joined: Jun 2010

I didn't have any other health problems. I was diagnosed on Nov 13th, 2007 and started chemo on Dec 26th. My doctor doesn't give radiation. I hope you have an easy time with the chemo. I had an easy time compared to others. My problem was mainly my blood counts droping very low,so I was very tired most of the time.
It sounds like you've done your homework and also took advice from others, so you have a head start.
Good luck, Sandra

ozchrissy's picture
ozchrissy
Posts: 22
Joined: Mar 2012

Thanks so much Sandy, I hope I follow in your footsteps. I have made lots of arrangements to get me through that fatigue stage. So hopefully I will be the same, and that is the only set back.

Oh Ebawa, I bought a mouthwash yesterday, after reading all the labels etc, and guess what. I bought Biotene. Can't believe I did the right thing, and got the same mouth wash that you recommended, have a big bottle and am even starting it now, to build up resistance and make sure I start off ok.

Must admit as it is getting closer, it is hitting me with what I am about to undergo, and of course the reality of the cancer is becoming more real. Have had a morning of sobbing and the 'why me's' but feel much better now, having got it all out.

ebawa
Posts: 37
Joined: May 2012

I know it is scary but you can do it. I had 28 radiation treatments while doing 2 chemos.
That helped my esophagus but it spread to my liver. I then had two other chemos and ended up in the hospital with pneumonia. However, I am currently cancer free (7 months now) so there is hope. I did every treatment the doctor recommended except surgery and I also juiced and did several other holistic things.

Hang in there, I will be thinking of you.

mardigras's picture
mardigras
Posts: 196
Joined: Sep 2011

Most of the people here will identify with your fears and do you know Chrissy, if most of us would admit it, there is so much help for the side effects, they can be almost non existent.
You have all the right ideas re hydration, thrush and keeping you strength up.
My husband believes that the fear is much bigger than the side effects, and does more damage. Hang in there, you'll be fine and it will soon be over.
God bless you and keep you.
Hugs and prayers
Marci

ozchrissy's picture
ozchrissy
Posts: 22
Joined: Mar 2012

I am normally very positive and have a great ability to re-frame things, and end up having a laugh about circumstances. I just hope I can keep that up, the last couple of days it has been hard to do so. Also I am tired, as most of you would have experienced the opiate pain meds are making me tired, but that being said, I am pain free.

I have booked a cruise for 7 days in January, and I am determined that I will be going on it. It is a goal, and I believe achievable. My daughter and a lot of friends are coming as well, so we will celebrate the end of 2012 and the beginning of a much better 2013 in style.

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