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And so it begins

Donna Faye's picture
Donna Faye
Posts: 420
Joined: Jan 2017

The sun is finally rising but I have been awake for some hours. No matter how many times one faces the beginning of new treatment ( this is my 4th time), it is daunting. Once again I am beginning w/o a port. I do not know why this always is the way but it has been. (3 times I have had chemo more than 3 infusions and never a port) So today I face labs w/o a port and the poorest veins in my only usable arm. Then tomorrow the infusion, but they have promised the IV team will be there to find the vein on first stick. I am going to ask for a port tomorrow. 

I have reduced my household goods quite a bit and took basic things to my son's yesterday. He has my bedroom ready for the few things I will bring. We hung the curtains, discussed house rules and then went out for a lovely late lunch. I am so at peace with moving in with him and his mate. They have treated me with such love. I also know I will feel more relaxed living with someone when I am not feeling well; I will certainly eat better as both of them are wonderful chefs, and I will not have all the stuff to manage as I am retaining very little. 

My house sale has moved so smoothly and the couple buying it could not be nicer or kinder. If all goes well, I will be completely moved by March 2. Equity will go into savings for that end of life care that we all know will be.

I will report back around Wednesday or Thursday and let you know how things are going with this new and promising treatment of lenvina/keytruda. I would prefer not to be doing treatment again, but I also want to continue to enjoy this 80th year of mine. And if it is as good as they hope, maybe 81,82... hugs,df

 

Fridays Child
Posts: 185
Joined: Jul 2019

Best of luck, Donna Faye!  You have everything arranged so well and I'm glad you're at peace with the arrangements.  We'll look forward to your report.

CheeseQueen57's picture
CheeseQueen57
Posts: 936
Joined: Feb 2016

I've had it almost 4 years now and there's been no talk of removal. It makes things so much easier with labs and when I was in the hospital with sepsis, it was one of 5 lines I had. Anytime I need contrast for any testing my port is used. I would insist on a power port and br scrupulous about the people who access it. Good luck on your new adventure. 

Donna Faye's picture
Donna Faye
Posts: 420
Joined: Jan 2017

My son also told me to get a power port. Thanks for adding that as I am tired of the endless pokes.

Fridays Child
Posts: 185
Joined: Jul 2019

Power port is what I have.  It has just celebrated its second birthday, and nobody has mentioned getting rid of it.  CheeseQueen, they use that for contrast when you have a CT, MRI, etc?  Interesting, as they have not used mine for that. Wonder if I should request it.

Donna Faye's picture
Donna Faye
Posts: 420
Joined: Jan 2017

What on earth would we do w/o each other. Our combined wisdom is greater than any one cancer center. It was my son who does CT's that suggested I demand a power port as it makes all the imaging with contrast easier. df

MAbound
Posts: 1086
Joined: Jun 2016

I hope all goes well this week so that you have a better idea of what the long term will be like. It's got to be rather liberating to not have so much to take care of otherwise. I know life got a whole lot easier for my husband and me when we cleaned out our old house and down-sized! I'm so glad you don't have to be alone for this.

zsazsa1
Posts: 504
Joined: Oct 2018

Oh, Donna.  Your bravery and practicality is so admirable.  I think that you are doing everything you can to make this easier on your kids, and to stick around as long as you can for them and your grandchildren.    When it comes down to it, we none of us know our expiration date, and there are new treatment advances being made every day.  Think of President Carter, who thought it was the end, and then a new antibody treatment vanquished his metastatic melanoma, a huge treatment advance.    I hope everything goes well, and easily, and that you have minimal side effects so that you can enjoy time with the family.

Forherself's picture
Forherself
Posts: 438
Joined: Jan 2019

Success in your treatment.  You are an inspiration with your strength and wisdom.

oldbeauty
Posts: 273
Joined: May 2012

Best wishes, Donna Faye, for a calm and curing treatment process.  And, go for the port.  I've had mine for 3+ years.  I have found, though, that I have to go to certain facilities w/in my treating academic medical center complex to get blood draws and contrast infusion through the port.  I've been told that my medical center requires a nurse to access a port, as opposed to a phlebotist I guess.  At the central "name" cancer center that's never an issue.  But at the women's specialty center I'd have to make special arrangement, or wait, for a nurse to come and do the accessing and infusion.  The port install was easy; I elected to have "sleepy" sedation during the procedure and not just a local anesthetic injection.  Went quick, like a colonoscopy.  Best wishes, Oldbeauty

zsazsa1
Posts: 504
Joined: Oct 2018

I had my port put in under local, but I did ask them to buffer the lidocaine with bicarbonate so that it wouldn't sting so badly when it was injected.  It went very, very easily.  I did unfortunately develop a clot in my internal jugular vein when they put it in - now I know that it was likely because of my underlying indolent B-cell lymphoma, not because of the UPSC, but we didn't know at the time.  If you have excessive tenderness at the insertion site, make sure to contact your doctor about it.  Don't wait for a week like I did!

MoeKay
Posts: 293
Joined: Feb 2004

I hope that tomorrow is smooth sailing for you, Donna Faye.  Wishing you nothing short of spectacular results from this new treatment regimen.  You are an inspiration for all of us on this board!

EZLiving66's picture
EZLiving66
Posts: 1436
Joined: Oct 2015

Donna, you sound so calm and at peace with your decision. I am hoping and praying this works for you and you have many, many more years on this earth. I believe you have made the right choice in your living arrangement. We had a life estate on one of our homes back in Wisconsin with our son and daughter-in-law so if either of us needs to go back there either together or alone, we have a home there. Hopefully, we'll never have to use it but it's nice to know we have that option.

Please keep us updated on how all this is going!

Love,

Eldri

Donna Faye's picture
Donna Faye
Posts: 420
Joined: Jan 2017

I did get all the lab work today and it only required one stickSurprised I meet with the oncologist at 9 in the morning to learn all about this chemo pill. It is a 30 day supply but the box is so big I cannot imagine what all is inside. It says kit, so we shall see tomorrow. My daughter is going with me to take notes and help me remember all that she says. Then the infusion at 10 - says 3 hours but the actual infusion is only about 30 minutes unless they really put it on s l o w drip! So guess she wants me to have time to see how it goes with the first dose. Thank you all for your good wishes. I am so happy I can share with you. I have always been a journaler for my thoughts, but with all of you I want to share my innermost feelings. Thank you for reading and replying. 

zsazsa1
Posts: 504
Joined: Oct 2018

Been thinking about you all day.  Glad it went smoothly.

Armywife's picture
Armywife
Posts: 430
Joined: Feb 2018

So proud of you!  I'd love to hear more about how you reduced your household goods.  I'm down to five days before the movers come, and I'm absolutely overrun with stuff - just possessions that don't matter.  I've donated literal carloads of it and have a bunch for sale on marketplace, but it's a time-sucking nightmare to deal with all the responses and no-shows.  Your post made it sound delightfully easy!

I'm a big port fan as well.  Mine had no issues going in - I remember the whole thing.  Never gave me any trouble, and I loved going to see my nurse team every five weeks to get it flushed.  I planned to keep it several years, and was surprised when my new gyn/onc ordered it out, and then of course when I had it out in December had a huge hematoma and a bruise that was about 8" by 12" on my chest.  Still have a sore spot and a lump there bigger than the port was to begin with!  I wish I'd insisted on keeping that port!

I just love that you are going to be fed by chefs and cared for, and that you have a daughter who will go with you to appointments!  Blessings all around.....and you are a blessing to us!!  So thankful we can all spill our emotions out here.  Let us know how tomorrow goes!  I'll be over here buried in old file folders, procrastinating packing some more!

 

Donna Faye's picture
Donna Faye
Posts: 420
Joined: Jan 2017

Remember I downsized 25 years ago when I had my BC. I gave the children all they wanted and traveled for 3 years. So most of what I have/had now meant very little. I opened my house to young neighbors who needed odds and ends, donated tons of stuff and am keeping only one room of stuff. So yours is a bigger task and I do understand how overloaded it can be. Don't be afraid to toss stuff.

cmb's picture
cmb
Posts: 554
Joined: Jan 2018

Donna Faye – I'm happy to hear that you'll be settled in with your son and his mate as you undergo treatment. You are blessed to have the support of your son, daughter and friends during this time.

Armywife – Good luck with your move. Thankfully I didn't inherit the pack rat gene that the rest of my family has, but I've helped family members with lots of stuff prepare to downsize. I'm with Donna Faye - call a junk removal company to come and haul away the leftover items. I've used different companies over the years and most have contacts with other entities to receive items that are still useable, but which you haven't found a home for yet. So it doesn't necessarily all go to a landfill. And if some of your folders contain personal information, check out the local office supply stores for their shredding services. While they will charge a fee, it could be tough to shred it all yourself, find a commercial shredding service or a free document destruction event in the remaining days before the movers arrive.

Donna Faye's picture
Donna Faye
Posts: 420
Joined: Jan 2017

I did not start treatment. Thought we had all the bases covered but Alas, No. read my thread -Important for potential lenvima/keytruda patients!

Donna Faye's picture
Donna Faye
Posts: 420
Joined: Jan 2017

I woke up Wednesday in the bluest mood. I had rolled all those side effects over and over in my head all night and suddenly was not sure I had made the best decision. The elevation of BP by Lenvima scares me as I do not want a stroke. So, not sure if the postponement for the BP to be lowered by new meds before I start was a good thing. I have always said I did not want to make myself sicker with the meds than the cancer. Now I am wondering if I should just go for the surgery and hope it goes well. Any thoughts or words of wisdom? as I know many of you have had many more treatments than I. Just had been ready to begin and then hit the wall. Head still spinning. df

Fridays Child
Posts: 185
Joined: Jul 2019

The blood pressure increase is scary.  Be sure they explain to you how they will monitor and manage it if it does increase.  I'd think they would keep very close watch on you since it's a known issue. What do your kids think, in particular your RN son?

Donna Faye's picture
Donna Faye
Posts: 420
Joined: Jan 2017

Son wonders why they did not discuss BP before the start day. They did tell me how to monitor but my BP is very connected to my level of stress - control freak that I am.  I think if the urine test had been clean, they would have started, so maybe a good thing to have time to think. I started the  valsartan today so will see how low the BP can get. Also took in the 24 hr. urine jug so will get that result tomorrow. After all this - 1-2" of snow for NC! Everything will stop as we cannot deal with that amount of snowLaughing!!!

CheeseQueen57's picture
CheeseQueen57
Posts: 936
Joined: Feb 2016

Just my opinion but the surgery sounds horrid and what about potential complications from of surgery (as one who knows). 

Donna Faye's picture
Donna Faye
Posts: 420
Joined: Jan 2017

Cheese,that is why I avoided surgery as my son says the surgery is just one part and infection and other things can be worse! I appreciate your comments as it helps me to hang in on the L/K treatment.

MoeKay
Posts: 293
Joined: Feb 2004

Donna Faye, have they suggested having you wear a 24-hour blood pressure monitor?  My BP is always elevated in the doctor's office, and if the doctor relied solely on in-office readings, I would have erroneously been put on multiple BP meds.  And I'm not under the stress you are with the uncertainties of starting a new treatment regimen.  I really think since you have a little time before you will be starting your new treatment that they should have you wear a 24-hour BP monitor to get the full picture of where things stand on that front. 

In my experience the 24-hour monitor is light years above self-monitoring at home.  I used to take mine at home and if I took it 4 times in succession, each time it would go higher and higher due to my stress level increasing.  I would finally stop, because I figured if I kept going, I would cause myself to stroke out!  When I wear the monitor, it's high when they put it on (due to anticipation) and then drops significantly with subsequent readings.  The overall average, as well as day and night averages, have always been within normal range, thus convincing my doctor that I didn't need more medication.  Also, my BP is especially low during sleep (in the range of 80s/40s).  Just using office readings as a basis for increasing my BP med might be disastrous, as further decreases at night would almost certainly put me at risk of passing out and falling.  And this is someone who can easily run 170/95 in the doctor's office.  This is an important issue for you, and the 24-hour monitor is a non-invasive, simple test that will give your medical team a full picture of your hypertension situation.  I would be interested in what your RN son has to say.

Sending relaxing vibrations your way!

 

Donna Faye's picture
Donna Faye
Posts: 420
Joined: Jan 2017

I will have that done next week. I should have remembered that as it has been done before.

See why I need ALL of you!!!

zsazsa1
Posts: 504
Joined: Oct 2018

Interesting what you say about repeated measurements in the same arm going up and up and up.  We're trained not to take it in the same arm a second time, for that very reason.

I definitely agree with the 24 hr home monitor.  But if you're going to do your own measurements, alternate arms, and only do it the one time.  Sit down with legs uncrossed for a few minutes, thinking restful, happy place thoughts, before you take it.  Most accurate is the traditional pump up sphygmomanometer and stethescope combination , as opposed to the self-inflating automatic ones sold for home use.

Donna Faye's picture
Donna Faye
Posts: 420
Joined: Jan 2017

can be used as 20 lymph nodes taken out 20 years ago. Also running into questions as to where to put a port as BP cannot be taken on port side. Also scarring and lymphdema on left side from masectomy.Looks like we will have to go back to the drawing board and see what to do. My old body is running low on available spots!

Fridays Child
Posts: 185
Joined: Jul 2019

I have had a port for two years, and no one has ever said anything about not taking the blood pressure on that side, and it has been taken from that arm many times. How interesting.

CheeseQueen57's picture
CheeseQueen57
Posts: 936
Joined: Feb 2016

I've had port for almost 4 years on right side and blood pressure is regularly taken on that side. Are you sure?  I would question that. 

oldbeauty
Posts: 273
Joined: May 2012

I believe I read that in the port disclosure booklet I recently came across and reread.  Not to do bp on that side.  I follow that directive now.  Oldbeauty

CheeseQueen57's picture
CheeseQueen57
Posts: 936
Joined: Feb 2016

I see my oncologist this week. I'll have to ask them. I never got a "port" book. 

Armywife's picture
Armywife
Posts: 430
Joined: Feb 2018

I sure do understand about the control part of it.  I'm three days away from movers and my house is in a complete shambles.  My advice is to take this adventure in small bites, DF.  See what the bp med does.  Get the 24-hour bp monitor.  Breathe.  Repeat.  They will watch you very closely for that bp.  Also you know that in the event you did have a stroke, if you're seen within the first hour or so, almost always the effects can be stopped or reversed.  I know it's a huge decision.  I think the surgery scares me more for you.   Praying that you'll gain clarity, and thankful that this is not an emergency where a split-second irrevocable decision has to be made.  You have a few days to see what the meds do and get some monitoring.  Hopefully that will bring you peace!

zsazsa1
Posts: 504
Joined: Oct 2018

i have had bp taken and blood draws done on port side.  not a ;roblem.

zsazsa1
Posts: 504
Joined: Oct 2018

you have to consider risk/benefit ratio.  benefit outweighs risk i think.

Donna Faye's picture
Donna Faye
Posts: 420
Joined: Jan 2017

OK- now I have some more info for next week! I want to talk to the person who is putting the port in and will get all this right - but very encouraging to know that may not be a problem. My primary has scheduled the 24 hr BP and am waiting on the lab results from 24hr urine collection. In a way it was good that we had to postpone as I am finding out lots needed to be clarified in this age of specialization. When I do get started, all should be known! xoxo df

Fridays Child
Posts: 185
Joined: Jul 2019

This might offer some clarity.  I wondered if the no BP/blood draws from the port side might be related to people who have the port in their arm instead of their chest.  I did find a reference to not allowing BP or blood draws from the arm if the port is in your arm.  That might explain why no one has ever said anything to me about it, as mine is in my chest.

cmb's picture
cmb
Posts: 554
Joined: Jan 2018

Surgery can be so tough as we age, just as your son and others have noted. So if the BP and other issues can be resolved I know that I'd be inclined to at least try the L/K treatment first. I hope things settle down so you can move forward.

Interesting comments about BP measurement and port side. I'll have to re-read the booklet I got when my port was installed, although no one ever said anything to me about not using the port side for BP. I've had my BP measured many times since the port and frankly I think they just use whatever arm is most convenient. But since I've taken a very low dose of an ACE inhibitor for several years to help preserve renal function due to my Type 2 diabetes, my blood pressure is almost always on the low side. In fact, I often had to stop taking it during chemo when my BP went too low.

BluebirdOne's picture
BluebirdOne
Posts: 358
Joined: Jul 2018

high blood pressure which developed about the time of my dx is that the NURSES who are supposed to be trained in the proper technique of taking BP are not so great at doing it. Felt both flat on the floor, (didn’t care) take the second reading on the oposing arm if possible, (nope) too lose iof a cuff, etc. Only after being dx with high blood pressure was I aware of the issues. My cardiologist tossed out his opinion that I had white coat syndrome, even though my blood pressure taken by his nurse, was normal. So I watch closely now when my BP is taken if they even follow the simple rules of taking a blood pressure. My life and subsequent treatment depends  upon accurate and proper measurement. Stroke runs in my family so I am also very vigilant. 

Denise

 

 

 

CheeseQueen57's picture
CheeseQueen57
Posts: 936
Joined: Feb 2016

And I'm pretty sure when I was in the hospital last summer with sepsis they had the cuff on my right arm measuring my blood pressure continuously. Where the port is. I'm betting this is a non issue. 

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