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Start tomorrow...didn't see it coming...

Kimba1505's picture
Kimba1505
Posts: 557
Joined: Apr 2010

Just to let you all know, Mark starts tomorrow. Just learned it today...thought we had until next Monday. Not the best coordination...it is what it is...start early end early. He will have 30 rads in 6 weeks with the 3 doses of cisplatin.
I have been following j3rey's post of "getting started, what to expect" so no need to repeat. Here we go...again.

backachedp
Posts: 124
Joined: Oct 2009

Hope it goes well..as well as possible. Will be thinking of u both tomorrow.

Pumakitty's picture
Pumakitty
Posts: 653
Joined: Mar 2010

Hope all goes well! Keep us posted.

Glenna M's picture
Glenna M
Posts: 1580
Joined: May 2009

I wish you both the best as Mark starts his treatment. I had 35 rads and cisplatin 2 days a week in three week cycles. It is very doable, it's tough but you will make it through this.

Stay strong and stay in touch, Glenna

rozaroo
Posts: 667
Joined: Apr 2010

My thought's & prayer's are with you both!

miccmill's picture
miccmill
Posts: 247
Joined: May 2010

Kim,

Glenn starts Thursday. 35 Rads Carbo/Taxol x3.

You and Mark are in my prayers.

Good luck, we'll be right there with you (literally).

Hondo's picture
Hondo
Posts: 5887
Joined: Apr 2009

Good luck on getting started, like you said start early finish early. The first few weeks of radiation will be easy it is when you get into the 3rd and 4th weeks that things start to get ruff and the last weeks #5 & 6 you are just looking for the finish line so it can all be over. The Chemo will make it feel a lot worse and he will have some good and bad days. Most of the affects will start to ware off a few weeks after the treatment stops and things will slowly start to improve each day after. He will need a lot of help and support so hang in there you are both in for a ruff ride, but remember there is a light at the end of the tunnel.

I don’t know how you feel about prayer, but if you don’t mind I would like to keep you both in my prayers.

dennis318's picture
dennis318
Posts: 349
Joined: Feb 2010

Try to keep it going and get threw the radiation and chemo, it's tough, we've all been threre. God Bless you, We're at the finish line waiting for you..Dennis. Prayers for everyone and when you get down, we will make this.

Scambuster's picture
Scambuster
Posts: 975
Joined: Nov 2009

Hi Kimba, All the best to Mark and you. I posted earlier in the year with some tips that can help Mark through each session. If you search 'Surviving the mask', you will see the post.

Hope it all goes well.

Regds
Scambuster

Kimba1505's picture
Kimba1505
Posts: 557
Joined: Apr 2010

It is all good...prayer, energy, positive thoughts. I like the thought that you all are at the finish line cheering us on. Like any race, it is harder at the end, that is where you need to push through, push the hardest, right? I know you will all be there. Thank you for that. All of your messages make me better for Mark. We will finish strong.
Miccmill, my best to you and your husband as he starts on Friday. I PM with another board member whose husband is just finishing up this week. I will PM you.
Going to "Surviving the Mask" next. Oh, also picked up the L-glutatmine, Vitamin C, and top notch aloe yesterday. Baking soda and salt at the ready.
Kim

Landranger25's picture
Landranger25
Posts: 208
Joined: Nov 2009

Will be thinking of you and Mark. He can do this. I was a 33 rad and 3 cisplatin/5FU guy. I was a fan of the aloe sunburn lotion with the lidocaine in it. When my neck got really fried it especially helped at bedtime. Stings when applied but within 10-15 seconds all is good. Can't emphasize enough, keep him drinking/sipping through all of this. As my Onco put it, "Whatever you do, don't lose your swallow".

Mike

Skiffin16's picture
Skiffin16
Posts: 8100
Joined: Sep 2009

You both have mine...he can do it, just do whatever it takes, day by day....

~John

CajunEagle's picture
CajunEagle
Posts: 363
Joined: Oct 2009

Good gosh, you are on the ball. And I thought my wife had a handle on all this pre-treatment stuff. Actually, she did.....it's at the half way point and beyond is where things get somewhat dysfunctional. And Oh, I just remembered. Today is my anniversary of last cancer treatment. Last year..June, 7th....completed my last radiation and chemotherapy treatment (that last bag of Cisplatin I think is the one that really did me in). Think I'll go out to lunch and have a huge Rueben sandwich, and lots of water to wash it down.

Larry

Skiffin16's picture
Skiffin16
Posts: 8100
Joined: Sep 2009

Like the new photo Larry......is that your home away from home..LOL.

Thumbs up on the Rueben, almost lunch here also....

~JG

D Lewis's picture
D Lewis
Posts: 1545
Joined: Jan 2010

I will be cheering on the both of you, every step of the way. You both can do this! As Kent says; believe.

Deb

micktissue's picture
micktissue
Posts: 432
Joined: Dec 2009

Best of luck to you and especially Mark. he's having the same treatment as I had. I wrote about the experience on my weblog and when I became to tired, depressed, sick to write, my wife wrote in my place. If you're interested in what we went through only since feb 17 (the day I started treatment) you can visit http://www.justwrite.us and scroll all the way to the bottom for day 0 and onward.

I would also recommend reading soccarfreaks blog. It is very detailed, funny, poignant, and full of information. You can find it at http://csn.cancer.org/user/72176.

Keep posting here and let all of us help you and Mark through this difficult journey.

Best,

Mick

stevenl's picture
stevenl
Posts: 587
Joined: Jan 2010

Hi Kim,

I am with the group on this one. Good luck and my prayers are with you.

Best,
Steve

MarineE5
Posts: 760
Joined: Dec 2005

Kim and Mark,

As everyone stated above, you both are included in my Prayers. You both are now in phase 2 of all of this. Phase 3 is the recovery.

My Best to Both of You and Everyone Here

ratface's picture
ratface
Posts: 1254
Joined: Aug 2009

You will do just fine. 39 Rads and the same Cisplatin regime here. Doable and you're much better prepared than I was.

Skiffin16's picture
Skiffin16
Posts: 8100
Joined: Sep 2009

LOL, only another Marine can truely appreciate the reference to phases.....although, in the USMC, I'm not sure which was worse, phase one or phase two....definitely phase three being the best.

JG

MarineE5
Posts: 760
Joined: Dec 2005

Yes, Skiffin, you are right, the 3 phases we had to go through to become a Basic Marine was really a test. In another post at another site, I referenced the similarity of Marine Boot Camp and IRT ( Infantry Regiment Training ) and what we go thru as Cancer Patients.

How closely similar they both are. As you mentioned, in Boot Camp, phase 1 and 2 were pretty much the same. but as we got through the first 2, the 3rd phase was doable.

All of us here that have gone through all 3 phases of cancer, can only hope and Pray that the newer patients do not have extreme discomfort while going through all this.

But much like Boot Camp, although there is allot of physical parts of it, we know that a big part of it is mental. We really have to have a positive can do mindset.

My Best to Everyone Here

Kent Cass's picture
Kent Cass
Posts: 1747
Joined: Nov 2009

of hopes are with you two. And, of course, Prayers. Just another, albeit major, leg of the journey for you. Would only advise to keep your Drs. in the loop with how Mark is physically handling it, as meds can help (1/2-tab of Xanax before the rads for me- did wonders). Your treatment isn't exactly like mine, so cannot advise what you will experience, Mark. Just know that there is no doubt, whatsoever, that you will emerge from this C-free; and, if possible, just keep that fact overriding all else over the next two-months. And, Kim- appears you are doing exceptional with the preparation, and have it together one heckuva lot better than the vast majority do. Again- let the Positive, and Prayers, rule the days to come for you two.

Believe

kcass

debbiejeanne's picture
debbiejeanne
Posts: 2590
Joined: Jan 2010

kimba and Mark, you know you have our prayers and best wishes. I truly hope all goes well. Stay strong and like the others said, we will be waiting on you at the finish line!!
Please keep us posted on Mark's progress ;0)

God bless you,
debbie

Kimba1505's picture
Kimba1505
Posts: 557
Joined: Apr 2010

Thank you everyone for your well wishes, they not only touch my heart, but also create determination. Day 1 was long but not hard. I know the days will get harder. I am making myself a chart to cross of days...I like to see the progress.
My best to everyone here!
Kim

debbiejeanne's picture
debbiejeanne
Posts: 2590
Joined: Jan 2010

kimba, you are so welcome! Please post to let us know the progress and to vent or ask questions, whatever you may need. That is why we're here. Stay strong and hang in there.
God Bless,
debbie

staceya's picture
staceya
Posts: 702
Joined: Jan 2010

I am with everyone else. I followed almost the same timeline as Hondo.
You and your family are in my prayers. Sleep, eat and drink whenever you can. I had to have a wound care consult for my neck, seems like you guys really keep on top of everything already. Good luck..when is your last day, we can count down together!

Kimba1505's picture
Kimba1505
Posts: 557
Joined: Apr 2010

If all goes as planned (how often does that happen?), Mark's last treatment will be July 19th.
Nausea already this morning. Hardly ate. Hopefully anti-nausea meds will kick in today and he will get some high density calories in. No PEG tube yet.

Hondo's picture
Hondo
Posts: 5887
Joined: Apr 2009

You are right nothing goes as planned, so we just pray that it all goes as good as possible. The nausea is normal or at lease for me it was and yes the anti-nausea works great. Get as much food in him as possible now because he will loose his taste in the next few weeks.

All the best to you both and keeping you both in prayer

stevenl's picture
stevenl
Posts: 587
Joined: Jan 2010

Hi Kim,

Just one thing to keep a check on, while it is on my mind. The anti nausea and pain meds may cause him to become constipated. Not a pleasant subject but be on the lookout for it.
There are good OTC medications for this. Myralax is one. I had some extreme problems with this because I let it go too long. Just didn't know any better.

Best,
Steve

MarineE5
Posts: 760
Joined: Dec 2005

SteveL,

Thanks for mentioning the results of pain med's and not drinking enough water during our treatments. Yes, we need to address this along with everything else we have to deal with while going through treatment. I used " Colace " at least once every other day. It is a stool softener and I was able to stay regular during all this.

You brought up a very good point, that is over looked many times. We also need to take in roughly 64 ozs. of fluid daily as well.

My Best to You and Everyone Here

j3rey
Posts: 56
Joined: Apr 2010

Our radiation nurse said that the aloe could help with the nausea as well as the 'burning.' We are done with the first two weeks. So far, fatigue is the biggest issue with dry mouth at night being next in line. Hubby (also a Mark) is sleeping a lot during the day and has broken sleep at night. We are trying a humidifier to moisten the air but don't really know if it is working yet. We seem to be about a week or two ahead of you but with no chemo. Prayers and good wishes to you two as you go through this. PM me to share high calorie recipes! :)
luck to you,
Jen

Skiffin16's picture
Skiffin16
Posts: 8100
Joined: Sep 2009

Hi Jen,

Everyone is a little different in reactions. I know that my neck externally was more like a bad peeling sunburn. It discolored (pretty dark brown, and dry). I did try the Aquaphor, didn't like the greasy feeling. I tried the Aloe (plant), but it was at that time I started having reactions to the Amifostine. I started having extreme fevers and wasn't sure what was causing it, so I stopped the Aloe first. Eventually I found out it was the Amifostine, but by that time I was near finished with the radiation. For me about the best thing for the radiation burns and dry peeling skin was just plain warm showers.

Best of luck, God Bless,
John

Kimba1505's picture
Kimba1505
Posts: 557
Joined: Apr 2010

I would say these are the biggest issues. Nausea is from the chemo and should be working itself out soon. (Only to reappear, I know).
I am having trouble having Mark realize how much he needs to to drink and eat. I get that when nausous the body's instinct is to NOT EAT. But his nausea does not get worse with eating, and he is taking 3 anti-nausea meds. But the drinking...I just went over with him the information from radiation about drinking 64 oz. a day and how dehydration can make you have dry mouth, nausea, and fatigue. It almost seems like he has to find it out for himself; and then we are in a "reacting" place; not the proactive place I have been developing. It is a personal stubborness, or a denial, or a little of both.
I will take helpful suggestions from care givers and all of you fighting or who have fought and perhaps had to learn the hard way or overcome your own barriers.
He gets the PEG on Wednesday and then his resistance to eating and drinking will be a little easier for me to overcome.
It is not a dynamic of our typical relationship for me to push, bully, or insist. This is new territory...and it really matters.
Jen, I will PM you for recipe swapping. He has very specific requirements for his protein shakes that has made things challenging too. (No milk, not too sweet, too gritty). Sometimes things that are good for you don't taste good!

Skiffin16's picture
Skiffin16
Posts: 8100
Joined: Sep 2009

Kim, you might try a little ginger ale in helping with Mark's nausea also....

With me it was more a mental thing usually. Still not easy to over come though. Just thinking of having to have another chemo visit would tend to make me feel nauseaous, even though I never got sick.

As for the de-hydration...if Mark gets sick from being de-hydrated, he more than likely won't do it again. Beleive me, been there, done that...it's really a bad feeling, and that's if you catch it before it gets too bad.

I know they have mentioned Emend, which I did have for the three days each time for the heavy chemo (Cisplaten, Taxotere and 5FU), but for the weekly Carboplaten during radiation, they only gave me Zofran.

The Emend is great, but pricey somewehre in the range of $150 for each capsul. I know that it's worth it if your sick though. The Zofran did knock the edge off somethimes, but not always.

Sometimes I'm sure Mark probably just becomes a little resistant, it's easy to do when you don't really have any control on your body and they things it's going through. Unfortunately that's just the way it is at this time. You can make it as easy as possible, or as rough as you can stand it.

Best,
John

Paulssister
Posts: 30
Joined: Jun 2010

Thinking about and praying for the both of you. Hopefully, the road you must now travel will seem shorter knowing so many are walking with you.

Kind regards,

Susan

Greg53's picture
Greg53
Posts: 830
Joined: Apr 2010

Mark,
Good luck and you are very lucky to have such a supportive spouse looking out for you!
Greg

Kent Cass's picture
Kent Cass
Posts: 1747
Joined: Nov 2009

I had to use Compazine (pills) a couple times in weeks #2 and #3. Keep the mouth hydrated, and would advise the rinses, and spitting as much as he can- rather than swallow mucous. Might help. I carried a small pail with me. Just seems a bit early to have nausea from the chemo, with as little as he's gotten so far, Kim. Might be a reaction to something else. Nerves can play into it as well. Of course, I know Mark's already had some things done, and everybody is different. Hopes and Prayers, Kim.

Believe

kcass

Pam M's picture
Pam M
Posts: 2194
Joined: Nov 2009

We're all pulling for you. Keep docs informed on the nausea front - there's so much available now, there's no reason to suffer. I got Emend, and it was MAGIC.

Pam M's picture
Pam M
Posts: 2194
Joined: Nov 2009

Oops - heavy "Enter" finger

Pam M's picture
Pam M
Posts: 2194
Joined: Nov 2009

Multi-post

sweetblood22's picture
sweetblood22
Posts: 3230
Joined: Jan 2010

Just wanted to throw in my wishes for a treatment with manageable symptoms. Best of luck to you both.

Irishgypsie's picture
Irishgypsie
Posts: 331
Joined: May 2010

Hi, Just wanted to add my wishes. Just got the 2nd dose of ciplatin wed; i'm so glad i got the peg. Mark is lucky to have such a great team member. We'll make it! I have 12 more doses to go with one more cisplatin! I just pray it's all worth it!! :)

Charles

delnative's picture
delnative
Posts: 452
Joined: Aug 2009

Dittos what Pam said about Emend.
They pumped enough Cisplatin into me to make a bracelet and a couple of rings, and I think I only threw up twice.
Please, check it out. Some insurers won't cover it because it's very expensive, but boy, is it worth it.
Best of luck, and prayers headed your way.

--Jim in Delaware

miccmill's picture
miccmill
Posts: 247
Joined: May 2010

Kim, I talked to our Hem/Onc Pharmacist at the hospital I work for and he says patients get good results with Emend but also says Aloxi (palonosetron) produces good results for patients receiving Cisplatin.

Good luck.

Kimba1505's picture
Kimba1505
Posts: 557
Joined: Apr 2010

John, Pam, Jim and Mic he has had the Emend. Also Zofran, Dexatron and Compazine. His neausea is described as "mild" or "low grade". Eating does not make him feel worse. John, I think I am up against something in his head, like you said. I put up a new thread inquiring about the psychological shift from healthy to helpless. I do not want him to learn anything the hard way...but there is a stubborness in this man that I have seen before.
Thank you for your input.
Kim

staceya's picture
staceya
Posts: 702
Joined: Jan 2010

Good Luck with everything. I sort of had a generalized low grade "poisoned" feeling that lasted for weeks. Usually when things bother me, I take a nap. This has always worked well in the past, but it sure didn't work with this. I went to bed and didn't eat or drink and was making a downward spiral. After a bit, water tasted less like sweat (now it tastes fine) and I could get down some chocolate boost. I didn't have a peg because (well because I am an idiot).. and there was a lot of stress. When he gets the peg, at least you will have less worries, but as everyone has said he still needs to take food orally.
Does any liquid taste at ALL tolerable...At the very worst (I think week 5..it was liquids only, but milk and boost were too milky, and juices burned, some diluted gatorade was tolerable. Everyone has been through similar and keep marching on. It WILL get better..
Stacey

Skiffin16's picture
Skiffin16
Posts: 8100
Joined: Sep 2009

LOL, Staceya, I think you are the only other person (me included) that actually desctibed water tasting like sweat...LOL. Water is usually the only thing that really quinches my thirst. During the rads and concurrent chemo even water tasted like sweat....like you (a year post) now it tastes good again and like water...yeah.

Greg53's picture
Greg53
Posts: 830
Joined: Apr 2010

Sounds like how I described magic mouthwash.....tastes like a 3 week old dead carp that a cat has peed on and mixed in with battery acid to make it liquid

Kimba1505's picture
Kimba1505
Posts: 557
Joined: Apr 2010

LOL.

Skiffin16's picture
Skiffin16
Posts: 8100
Joined: Sep 2009

See Greg, sometimes it just isn't so bad not having the ability to taste things.... of course it's nice when it comes back.

JG

j3rey
Posts: 56
Joined: Apr 2010

I love that your humor continues. It gives a lot of hope to those of us just getting started. :)
Jen

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