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Time to start treatment...UGH!

allmost60's picture
allmost60
Posts: 3184
Joined: Jul 2010

Hi all,
What a morning! Went to my cancer doctor this morning and she felt a new lump on the right side of my groin. She also said the tumors in my neck have gotten larger and the lymph nodes under each arm feel swollen. I asked if she wanted to do a ct-scan to confirm and she said it wasn't needed...she could feel the changes physically and now wants to get treatment started. She is going to go with the R-CVP once every three weeks, 6 to 8 rounds. Said she will do a CT-scan after the third round to determine if the chemo is working. We talked about my problems with prednisone and she has set my dose at 60mg instead of 100.I'll take it for 5 days in a row and then thats it until the next treatment. The most I have ever taken is 25mg a day and that in itself wired me like an eight day clock, so this will be interesting to say the least how 60mg will affect me..UGH! I get my chemo training on Wednesday then next week on Tuesday I'll meet with the surgeon to put my port in which is scheduled to be done the next day on Thursday. My first treatment will be on Friday the 26th starting at 8:30 in the morning. The nurse said it will take anywhere from 6 to 8 hours depending on how well I do. Anyways...that was the scoop for me today. Wish I could have done a little longer with the "watchful waiting", but it was not ment to be I guess. On-ward and up-ward...kind of a lousy way to start the week out. My stomach has been doing flip flops since I left the clinic. Hope Tom will check in later after he gets his first infusion...hope it's going well for him. Best wishes to you all...
Love...Sue

COBRA666's picture
COBRA666
Posts: 2413
Joined: May 2010

Sue,
About that port a cath!!! I had mine put in and they scheduled me for chemo in 2 days. The onc dr. said he wanted to wait about a week after the cath was put in because the surgury site would probably be to sore so soon for any infusion. So we waited a week. I would check to be sure. I can tell you it was sore even waiting a week for me. The port a cath is an easy way to give chemo, but it still hurts when they stick you. John

truckingalong
Posts: 444
Joined: Aug 2010

Oh boy - Sue, I wish you the most comfort when you go through this stuff. I will have Mediport planted 2 days from now - on Wed then next week will have bone marrow test then Aug. 30th starts my chemo. Now, John, I understand why I get this planted then wait a week and half to start chemo. I really really dread this - my body is sensitive to meds. I know about Prednisone. I once took it (for my back problem) and I had not slept in 5 days and got disoriented. Geez, hope there is another medication? But low dose could help but for you Sue, maybe your body will react better this time since you will be going through chemo. Best of luck and you are in my thoughts.

Love,
Liz

allmost60's picture
allmost60
Posts: 3184
Joined: Jul 2010

Hi Liz,
Looks like our time period for everything getting started is about as close as it can get! Hope the group is up to the two of us bugging them while the prednisone is wrecking havoc with us...ha! If John is right, maybe they will delay my treatment because of the port being put in only 2 days before treatment is scheduled. I'm sure the surgeon will let me know when we consult next Tuesday. My onc told me today that the prednisone is "absolutely necessary" as part of treatment...no if's and's or but's about it...UGH! Looks like you and me might be doing some late night corresponding Liz if we can't sleep. Thats ok with me...ha! Actually...I'm scared s#!&less right now and my tummy is flip flopping like all get out. Hubby came home from work and is now in a very silent mood after hearing my news. Poor guy...this was his first day back to work after 2 weeks being off for vacation. He really did have much of a vacation. Oh well...we will get through this. I'll make him some salmon patti's for diner, that always makes him happy. Tell me how your mediport implant goes for you Liz...I'm all EARS!!!!...ha!
Love...Sue

dixiegirl's picture
dixiegirl
Posts: 1043
Joined: Apr 2006

Oh sue, please talk to your onc about tapering down the prednisone instead of just stopping. My onc told me that sudden stopping the prednisone is fine, but you'll crash big time and be in a lot of pain. I chose to keep the 7 day cycle and not hurt so bad.

Sorry the w&w is over, but better to get it over with now. CVP+R is the lesser of the two evils. You know you can get your chemo without the port....other veins will work till your port heals :)

You'll be fine missy!! I understand you're flipping out. Just warm up the old computer, keep those fingers typing!

truckingalong
Posts: 444
Joined: Aug 2010

Hi, Sue,
I definitely keep you posted!! The reason why I will have my first chemo on Aug 30th rather than one week earlier is that my hubby will go on a hiking trip to Newfoundland with my father for 1 week starting next Sunday. This was planned and paid in advance with no refund money if this was cancelled. So we decided that after he returns on 29th he will be able to be with me on the 30th and the fun begins! My 23 yrs old daughter is sweet to plan and stay with me when the guys leave - I don't like to be alone as much - it helps calm me down a bit to be with people. The only thing I look forward is the chemo training this Friday so that my mind will not buzz as much to get questions answered.

Love,
Liz

allmost60's picture
allmost60
Posts: 3184
Joined: Jul 2010

Hi Liz,
I'm looking forward to chemo training also this Wednesday. Maybe nurse Rita can answer most of the questions that are bugging me. Hate the prednisone sooooo bad! I also hate it when my body feels hyper or I can't sleep. I like peacefulness, not jittery feeling. By the time you start your treatment on the 3oth I'll be able to share how I'll be feeling. Pretty scary stuff huh? Glad your sweet daughter will be staying with you while your hubby is gone. Get some fun chick flicks and enjoy each others company. My grand daughter will be 20 on Sept 1st and we have so much fun when she comes over and hangs out with me. She just makes me giggle...awww sweet youth!!! Take care...
Love Sue

onlytoday's picture
onlytoday
Posts: 603
Joined: Jun 2010

You are going to be fine. You're very strong and are facing all of this head on. Plus you have a great support system with your husband! And don't forget about us too! Hugs and prayers to you tonight.

vinny59's picture
vinny59
Posts: 1032
Joined: Nov 2006

Hey Sue good luck with your treatments, remember to take it a day at a time, you will be so surprised how you adjust. Sounds wierd but it's amazing what your body can do...... Speaking of the porta cath, I had mine put in Monday and chemo on that Wednesday!!!! Like I said amazing what your body can do!!!!! Praying for you! Vinny

allmost60's picture
allmost60
Posts: 3184
Joined: Jul 2010

Thanks Vinny...guess it's my time. Hope you are doing good and your counts are back up. I'm ok...it really helps knowing so many here are going through it and have answers to the many questions. Take care...
Sue
P.S...Made killer slamon patti's tonight which put a smile on hubbys face again...ha!

vinny59's picture
vinny59
Posts: 1032
Joined: Nov 2006

Them patties sound good!!!!!!! my counts are still lowwwwwwww!!!!!! hahaha going tomorrow for shots and blood work! hope I'm not officially anaemic would really be bad, I'm very close........... Vinny

allmost60's picture
allmost60
Posts: 3184
Joined: Jul 2010

Dang...what is up with the low counts? I was hoping to hear that they had come back up...so sorry! It's got to be hard on your energy level when your counts are low. I'll keep positive thoughts for the next shots to kick in and shoot the counts back up. Fingers are crossed...(all 9 of them)..ha!(missing my left thumb)...ha! I give "high 4's instead of "high 5's"...give me 4, buddy...ha!
BTW ..we are avid fishermen and have soooo much salmon and steelhead that I'm always trying new receipes. Hubby pressure cooks it, smokes it, and of course we grill it,and bake it, but I'm starting to run out of "new" ways to fix it. I'm glad I taught Steve all of my receipes so that he will be able to do the fish cooking when I'm not up to it.I'm also hoping that all of the fish we eat will be a PLUS for me with keeping my blood counts in check. We will see! You hang in there...my prayers are with you!
Sue

merrywinner's picture
merrywinner
Posts: 627
Joined: Aug 2009

What a day for you. You had the really quick version of the watch and wait. I did too. Now for step 2...I wish you all the best. Don't worry overmuch about the Prednisone. It's no fun but you will get through it. It is such an integral part of this treatment and I just kept telling myself that. There is an upside to it and that is if you normally have any garden variety aches or pains, morning stiffness etc with the Prednisone you won't have any. Lol it's something!! Thank goodness it's just for 5 days. I did not have a port so I can't help you there but so many here have and they can. Getting it all started and having that first treatment is the scariest but soon you will be a pro. Now the good part for you is the timing, if I'm counting right...Can you say Merry Christmas??? Good luck and God bless. Mary

forme's picture
forme
Posts: 1162
Joined: Aug 2010

Hi Sue,
So sorry to hear the news. I am sure it was not what you wanted to have happen. This new "family" is ready to support you. I know you must be scared. The first time for me was very scary. The second time I was so shocked, but then used my shock and fears to become empowered.I still was scared, don't get me wrong. Cancer is scary. This time, I found all of you. What a blessing. Your many strengths are there. Your wonderful sense of humor and your kindness shine through.
Hugs to you...
Lisha

GalacDad's picture
GalacDad
Posts: 40
Joined: Aug 2010

Sue,
Best wishes on the up coming procedure. Hopefully you are going with a MEDIPORT for chemo infusion. The implant procedure does not take too long and you will not have to worry about outside infection like with the PORTACATH. I was one of those that had started chemo 2 days after the implant also. It feels like a good size bee sting, but they also use a numbing agent to assist with the process. After everything gets going the only part that bothered was the initial stick.
Things will calm down and almost become routine after the first couple visits. Watch for the loss of appeitite and fevers. With the appeitite loss I found "muscle milk" to be a good substitute. My Onc doc wanted to see the make up of this prior to me taking any. It really helps with maintaining your protiens and vitamins.
Time to start the good fight, Sue. Keep us posted.
Dave

allmost60's picture
allmost60
Posts: 3184
Joined: Jul 2010

Hi Dave,
My understanding about the port for me is that it will be in me for 2 years and implanated under the skin on the right side of my chest close to the heart.(that kind of freaked me out). The doctor that removed my groin tumor for biopsy is the one who will be doing the surgery. I consult with him next Tuesday afternoon and then he will do the implant on Wednesday...chemo the next day, Thursday. Looks like next week is gonna be a busy one for me. I Need to get a bunch of stuff done around this house over the weekend so hubby won't have to do it while I'm going through the first treatment. Wasn't prepared to do this so quickly. Where do you get the Muscle Milk? Is it similar to Ensure or Carnation Instant Breakfast?
Sue

cookingirl's picture
cookingirl
Posts: 183
Joined: May 2010

Hi Sue - just wrote you on the site you replied to me and found out much more about you here! You make me hungry with your talk of salmon, my fav fish! Do you live in the Northwest to have such access to it? YUM - lucky you. Prednisone with CVP-R for me is a 5o mg. tablet in the AM and PM for 5 days. First time I've taken it without tapering and that's a high dosage. Doesn't seem to leave my body before next Chemo starts so thus no sleep. Have another month to go with number 5 & 6 coming up. When I had my Port put in, due to being on blood thinner Coumadin, I was brusied from my neck to waist and they waited two weeks to start chemo. Glad I did it since I have tiny veins. Let me know how your first Chemo went - I too had Rituxan 7 hours the first day and CV the second - after that, all in one day. God Bless - Fran

GalacDad's picture
GalacDad
Posts: 40
Joined: Aug 2010

Sue,
Fully understand the nervousness you are going through, still have bouts of it myself when I have to go in for follow-up visits. Don't push yourself too hard trying to get things set around the house, you really need your energy levels up for the first couple of treatments. I did the same thing, checking up and organizing everything so it would be easier for my family but actually madse things more stressfull.
As for the Muscle Milk. You can find that at any GNC store or where they keep suppliments for body builders. It comes in both a premixed liquid or powder. The liquid ones come in a 12 pack or you can buy singles. Last I checked they had 5 different flavors. Ensure would be would be good also, but the Carnation breakfast just was not enough protiens. I was using these mostly during the bought of nausea. After 2-3 days I could go back to eating normally, and then cycle all over again.
Don't worry about the port implant, they want it on your left side to tie into a major vein, it should be placed subcutaneously and not interfere with anything.
Take Care
DAVE

allmost60's picture
allmost60
Posts: 3184
Joined: Jul 2010

Thanks for the info on where to get the Muscle Milk. We have a couple of GNC stores here in town. My port will be put on the left side...nurse said since I sleep on my right side it will be more comfortable on the left, plus like you said, they need to tie into a major vein. I saw a model of what my port looks like today and was able to see how it will look under my skin. The nurse said that since I'm kind of skinny my port will probably be knowticeable...no big deal to me. Anyways...I'm good to go and feeling ok about everything. Thanks again for the info. Take care...
Sue

allmost60's picture
allmost60
Posts: 3184
Joined: Jul 2010

Hi Fran,
Yes, we live in the Pacific Northwest.... Yakima Washington. We do all of our salmon and steelhead fishing about 2 hours away from home on the Columbia River. Drano lake and the Wind are inlets of the main river which is our favorite fishing spots. been fishing there for the last 30 years. We have year around access. I'm a "fair weather fisherman" anymore and leave the hard core fishing to my hubby and sons. I use to do it "ALL" back in the day, but not now. Spring, summer and fall fishing for me...no winter. My guys fish when it's snowing...Crazzzzy!..ha!
About the prednisone...the chemo nurse discussed at length today how to take mine. Total 60mg 3 tabs(20mg each) 3x's a day for 5 days. No tappering like Dixie told me to ask for. We will see how the first week of prednisone goes and the nurse said they will make any new adjustments necessary by the second treatment. I'm keeping my fingers crossed about the sleep issues and nervousness. I was told I will be getting my full treatment in one day..I won't have to go back the next day for anything. Good luck with 5&6 treatments coming up. I will post how I do after my first one. Take care...
Love...Sue

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