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Im Back!!!

JulieBelle's picture
JulieBelle
Posts: 61
Joined: Jul 2013

Hi All

Sorry for my absence.  I have had another stint in hospital (11 days) with infection problems. 3 my Onc thinks!  My Picc line (which was removed and another put in on the other arm), shingles and a chest infection!  Consequently he threw all sorts at it and finally we pulled through. This was a tough one and even though I have now been out of hospital for 10 days I am still totally lacking my usual oomph!   My wonderful hubby and daughter herre for me and my niece (a nurse) came over from new Zealand to help me too which was wonderful.   She flies home today.  We had a lot of fun together - laughter being one great medicine I believe!

I did have a piece of very exciting news while in hospital.  A CA125 tet showed a DROP of 96 points from 650 to 556!   Seemed incredible whil my body was going through all that!   I was back on the Etopotide last week but have dropped the Avastin - just too expensive at $3,600 a dose until it is approved on our free medical (PBS) list for Ovarian Cancer.   I had 6 rounds and can always do a few more down the line if it is felt it would be worthwhile.

I have managed a couple of short walks this week, my lungs are much improved and feeling a little better each day.  My darling grandson turns one this Saturday and what a joy he is!

Carole -sorry to hear you are having some upward creeping in your numbers.  Yes I can imagine you will be pleased to meet with and discuss it with your Onc.  Let's hope you can turn it around asap!

Love and healing to all,  Julie xx    

seatown's picture
seatown
Posts: 207
Joined: Sep 2012

So glad to see you back, but so sorry to hear of your hospitalization. Sounds like things are slowly getting better -- and that's GREAT news about the CA 125 number going down! Hope you're completely back on your feet in no time. And happy birthday to your grandson! C.

Nflinchum
Posts: 73
Joined: Jun 2012

Hi Julie,

I was getting worried about you and assumed there wee some issues going on. I am glad you are getting on your feet. Great news about your CA 125 numbers. I have been sick myself with the crud as we call it. I am better now. My CA125 numbers came down after my first round of doxil and the trila drug AMG386 which I could or could not be getting. They came down 1048 points but I have a long ways to go for they are still 3028. I get my 3 round of doxil on Dec. 4th which is my granddaugjters b-day. You take care and you are in my prayers. Happy B-day to your grandson. Enjoy him they grow up so fast.

Nadine

JulieBelle's picture
JulieBelle
Posts: 61
Joined: Jul 2013

Sorry to hear you have been unwell too but what a fall in your CA125!  That is amazing!  Keep up the good work.   

Julie x

Lovingmymom's picture
Lovingmymom
Posts: 44
Joined: Nov 2011

Hello ladies - just wanted to comment on how tough you all are, even though I am sure it doesn't feel that way sometimes.  It's good to hear you're all doing as well as can be expected and enjoying those things that bring you happiness.  I haven't posted in awhile as my mom "took a break" from chemo for three months and we were enjoying the summer and fall.  She has returned to chemo this week at the advice of her onc due to some spreading throughtout the abdominal cavity and now the ovaries are involved.  This is the first time that they have found fluid and ascite build up so I'm not sure what that's going to mean.

Mom is also a tough cookie and gets up everyday and puts one foot in front of the other and just keeps going.

Keep up the good work!!!

 

 

Nflinchum
Posts: 73
Joined: Jun 2012

it really hard being a tough cookie. I havent done as well in being tough this second time around. I do stay on the go all the time even though I dont feel like it. I am helping my daughter raise my granddaughter soon to be seven. I get up at  six every morning get ready and get my granddaughter ready for school. I drop her off and then I go to work from 8 to 5. Plus I am getting chemo every week. I'm sorry your mom is having issues. Good luck to her and keep me posted on how she is doing. Keeping you both in my prayers.

nadine

sk_Nebraska
Posts: 26
Joined: Sep 2013

Thought the Shingles had you there.  These side trips we take into infections, etc are a pain to be sure. Congrats on the CA1225 numbers dropping. Wishing for a continuation in that direction for you.

Carole, Nadine--glad to hear you online as well!! I'm feeling a tad needy to be in you three's  presence, so pls bear with me. Onc believes I am Carbo resistant--drats!!!

I will share my recent setbacks briefly to illustrate that we do overcome soooo much and come back.  Late Sept. I had fever--finally diagnosed with an infection usually found in stables, killing newborn foals unless vaccinated. We do live in the country and provide a therapeutic ridiing program/site for the handicapped.  I contracted this disease  because of immunocompromised state-AIDS patients are highly likely to contract as well.  Port and perpheral site infected--IV ventomycin for 2 weeks/hooked to traveling bag. Avoided hospitalization since went well with daily monitoring at Infectious Spec. Port removed at end of antibodic course.  New one installed after 5 days clean culturees--avoided 3-6 months antibodic followup--second opinion at University med ctn.

Neuropathy meant drop Taxol, added Gemzar, that took blood counts way toooo low--transfusions of blood and platelets--hives.  Felt very feeble with the infection. Fell 4 times, one sprained ankle. Got a great colorful cane as a result.  Bowel blockages decided to join in the fun--kept things open but very painful.  Between the antibodics causing diahr...being told to consume yogurt--Miralax twice a day has straighten me out since off antibodics--but dignity is taking a hit occasionally.

Fuzzy hair appearing since off chemo for so many weeks and yes, I could tell I needed to be ON. Had second weekly chemo Wednesday, Abrazane (Paclitaxel) will have Avastin every 3rd week.  So three weeks chemo, one week off. Much smoother and hopefully not so much neuropathy. 

Thanks for the patience--daughters and grandson came for a weekend visit during, friends have been fantastic keeping spirits up. The holidays should be bright--will fly for first time since diagnosis to Chicago for family Thanksgiving, then to Indianapolis for family Christmas.  Schedule works with just Christmas chemo late by a few days.

After the New Year will have the chat with onc as to how do we get a surgical consult.  I want more minds at the table. Chatted this up with general doc today and she agrees--need to lookk at alll avenues. My onc is terrific--been together 15 years--BC last time.   Want to explore Clinical trials as well.I am blessed to have this time and the last 15 years and now that I have found this board I'm hangin' on tight.

I hope the weekend is a good one for you all. Thanks for being here.

Sue

 

 

Nflinchum
Posts: 73
Joined: Jun 2012

Hi sue,

sounds like you have been through a lot. I responded to carbo my first time around but when my cancer came back this year the dr tried carbo again.i had three rounds and didn't respond. Now I am in a trial getting doxil and hopefully the trial drug AMG386. I to have neuropathy. Mine seems to have gotten worse after I went into remission for seven months. Mine is bad.

sounnds like you have nice plans for the holidays. I hope you enjoy. Keep me posted on how things are going. You are in my prayers.

nadine

seatown's picture
seatown
Posts: 207
Joined: Sep 2012

Happy travels, Sue! Glad to hear you are getting around a bit. I've made 4 trips since June & I know it did me a world of good. Enjoy every minute. Sorry to hear you've had so many other health issues -- hope they are behind you.

Just wondering if you had any nasal/sinus issues from the Avastin. I had read a little about this in the distant past, but nobody seems to mention it with Avastin recently. During all my months on Avastin, it's like I've had a miserable head cold. Been taking DayQuil/NyQuil with my oncologist's blessing, which helps. But I'm so glad to have only 2 infusions left so I can get rid of mounds of Kleenex. I know I should be grateful to have such small problems. Just hoping my CA125 stays in the normal range & stops creeping up.

Best wishes always, & stay well. Avoid those falls!

carole

JulieBelle's picture
JulieBelle
Posts: 61
Joined: Jul 2013

Wow Sue you have been through the mill!  Sounds like a good idea to broaden the "brains trust".  

 

I have started taking Lyrica (in Australia) for neuropathy and seems to have improved it a little.  I am certainly walking more comfortably and less like a duck!

 

My CA125 this cycle has gone up 20 points so not too bad considering the recent number of infections!  I had another this last week and another hospital visit but shorter as I think we got onto it quickly and back on my chemo this week - 3 days of Etopocide every 3 weeks.  This is cycle 4.

 

A reminder girls to take your temperature regularly and present yourself to A & E if it hits 38!!

 

Cheers, Julie 

sk_Nebraska
Posts: 26
Joined: Sep 2013

Aha! So that is the cause of the sinus junk! Have had it since day one of treatment of Avastin. Yes, mounds of Kleenex!! But not the worst side effect:) 

I think vigilent is my new watchword--everytime I get complacent, bam--I get my comeupence (sp).

Am now on a mission to add more balancce to our social lives--my hubby tends to work toooooo much. He is very supportive, but I have slacked off in the "socializing" category and it's me who plans. Not liking the reality that we may plan, but the body will  have it's say. 

Teaching me patience?

Continued healing to you all

Sue

Lovingmymom's picture
Lovingmymom
Posts: 44
Joined: Nov 2011

Hello All,

I was wondering if anyone has had a regimen of chemo that is not delivered by injection?

Mom is scheduled to have a port put in this month and she is struggling with the decision.  Her fears are simply, infection and blood clots.  

My question is, if she chooses not to get the port, is there a different treatment option by pill or other means, or are all these other drugs (avastatin/carbo etc) administered by injection.  She is on her 18th round of gemcitibine and the needles are taking their toll on the only good vein she has left.

Many people have such great things to say about the port and always wish they had put it in earlier.  There is no denying the risks involved in any surgery, but overall they seem very well received.

Perhaps this is just a mental hurdle.  I guess I have some more questions for the Doc. 

Thanks

J-

 

 

 

seatown's picture
seatown
Posts: 207
Joined: Sep 2012

FWIW -- I'll reply with my own experience. Before I was diagnosed with primary peritoneal cancer, I had a monthly infusion of Remicade for nearly 10 yrs for my lifelong rheumatoid arthritis. (I'll admit, sometimes the infusion nurses had a little trouble finding a vein.) So when my cancer was diagnosed and I learned I'd have Carbo/Taxol infusions for that, I assumed I didn't need a port. But after one chemo infusion, my doc & the nurses convinced me of the usefulness of a port. Had one put in more than a year ago, easy procedure by vascular surgeon & anesthesiologist, no problems. (And I have an ancient history of blood clots in my lungs.)

I've been told if the surgeon attaches the port to the muscle with a tiny stitch or 2, it helps to keep it in place. Having a port is MUCH easier than having the nurses struggle to find a vein all the time--especially since I am now finishing about 15 months of chemo infusions.

Best wishes, Carole

JulieBelle's picture
JulieBelle
Posts: 61
Joined: Jul 2013

I had a port which worked well for many months but did later became infected.  I now have a PICC line in my arm which was done with the help of ultrasound and needed only a little local anaesthetic when the needle went in.  Very simple to put in.  Only disadvantage - it is on the upper arm so you need to wear sleeves if you wish to disguise it!  I don't worry about that as it is summer here and just put a light gauze sleeve bandage on it.  It certainly makes the administering of chemo simple - probably a little more simple than the port because the chemo nurses don't need to perforate the skin to access it. It has two small tubes externally, one of which they will attach the chemo input to.  Totally painless and not intrusive in the slightest.  

I have had one chemo administered in tablet form, there are probably others.  It was called cycloblastin (here in Australia) which I had along with Gemcetabine.  It didn't do the trick for me but I am sure has helped many others.

If your Mum has either a port or a PICC line she will find the whole process so much simpler - the big difference I think is that one needs a general anaesthetic to install and the other doesn't.

Yes it sounds like a few more questions for the medicos!

I wish you both well.

Julie         

sk_Nebraska
Posts: 26
Joined: Sep 2013

Just adding my experience--I have had 2 ports "installed" both with only local anesthesia so I could go to lunch with a friend. Lidocaine I think is what they used.  Both went verry well. Had the first port removed due to infection and a week later had the other inserted on the opposite side, left.  I have had a PICC line severral years ago and it was fine, upper arm as Julie described. 

Good luck!!

Lovingmymom's picture
Lovingmymom
Posts: 44
Joined: Nov 2011

Well, port is in!! Mom ended up with an infection due to new blood clot, but is home in time for Christmas so Thank God!!

She had alot of anxiety about the port but at the end of the day, all went well.

Looking forward to a one week break from chemo. 

Merry Christmas to all and may everyday be a blessing in 2014. 

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