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I think it may be working :)

Tina Brown's picture
Tina Brown
Posts: 1054
Joined: Nov 2009

I've not been posting on here very much lately as I have just been through and finished a whole week of Topotecan infusions. As you may be aware I have been suffering from severe bloating and discomfort brought on by the activity of my cancer cells.

So, one week later and I had this eureka moment last night. Usually I can only eat small amounts of food at each meal time as my tummy blows up and I am dreadfully uncomfortable. I take all kinds of meds to relieve it but none of them are particulary effective. I have had this problem since July this year. So, last night after I had eaten I waited and waited and guess what ................ NO BLOATING. I felt comfortable in my tummy for the first time in nearly 3 months.

Topotecan rocks :)

It wasn't so bad. 1 hour every day for 5 days. I felt a bit sick and tired but I coped. I wore a "cold cap" which wasn't too bad either. I need another few weeks to be able to see if that has worked as it is early days, but I can cope with this for another 5 cycles.

Tina xxx

VickiReed's picture
VickiReed
Posts: 66
Joined: Dec 2010

Tina-
So glad to hear this! I pray that this is the answer for you! This cancer
is some miserable stuff. My CA-125 is on the rise and I have body aches everyday that
make me feel like an old woman. I'm guessing the Cytoxan isn't working for me. I'm curious about what the doc will have say tomorrow.
When is your next scan? When do you have another set of treatments? Hope you enjoy another dinner tonight!!!
XXXX
Vicki

westie66's picture
westie66
Posts: 642
Joined: Jun 2010

That's great news, Tina!
Cheryl

SOPHIE333
Posts: 92
Joined: May 2011

This is wounderful news and you are so inspiring to us all with your fight to get better within this cancer. I too hope this is it for you and that Topecan will keep you on track for a loong time. And I do hope your tummy will be in order again. This is the same as for my mum as the tummy troubles has been even worse than the chemo itself for her but she is doing MUCH better now after 6(!) rounds of carbo/taxol (fingers crossed). Now she is of the food complements during nighttime and can eat totally by herself again without ´feeling ill or throw up.. Hope to hear from your progress soon!

Love,
Sophie

stella65
Posts: 150
Joined: Feb 2011

Glad to have a positive update, I have been thinking of you and hoping you are ok, it must have been quite a surprise when you waited for the bloating and it didn't come! Keep up the good work X

AussieMaddie's picture
AussieMaddie
Posts: 345
Joined: May 2011

That's great news. As you know, I'm following behind. On a break from chemo at present. No sign of the ascites, but CA125 going up. When I experience the first symptoms, I asked onc. about Topocan.

Do you mind if I ask about side effects of it. What's a "cold cap"? Never heard of that before.

Thanks,

AussieMaddie

Tina Brown's picture
Tina Brown
Posts: 1054
Joined: Nov 2009

I think the cold cap is only used here in the UK. It looks like a swimming cap and is filled with a kind of gel. It is stored in the freezer on my chemo ward. The purpose is to prevent hair loss so you have to wear it on your head 15 minutes before your chemo starts. Throughout the chemotherapy and 15 minutes after it ends. You have to change it often as it does begin to thaw out after a while. The side effects are instant - BRAIN FREEZE (as my son calls it) It is intensly cold and gives a very painful headache for the first 5 minutes. If you can bear that for 5 minutes then you will be OK. After 5 minutes your scalp becomes used to it and it is less painful until you forget you are wearing it.

As for whether it works ................ well its only been 1 weeks and I still have all of my hair. I will let you know after my next chemo if I still have my hair.

Tina xxxx

PS Cold caps only tend to be offered to ladies having chemo for short time spans. I don't think it is very effective for the longer ones like taxol/carbo.

Tethys41's picture
Tethys41
Posts: 1053
Joined: Sep 2010

I didn't use one of these during chemo, but started putting ice packs on my head, fingers, and toes during my 3 hour taxol infusions, as well as sucking on crushed ice. I started this practice after my hair had fallen out from my initial treatment, but by the end of my treatments, I had about a half inch of hair on my head. I never sufferred from neuropathy in my fingers or toes, and never had any mouth sores.

eward
Posts: 210
Joined: Feb 2010

What wonderful news to be encouraged by!
xoxo
Eileen

Tina Brown's picture
Tina Brown
Posts: 1054
Joined: Nov 2009

I have just been to see my oncologist for my CA125 and CT results. I had 1 round of Topotecan and am beginning to feel much better.

However, my CA125 had gone up from 1,479(ish) to 1,727 (ish) but my oncologist thinks the numbers went up before my chemo kicked in.

My CT scan (before chemo) showed that the disease has prgressed in the pelvic area and I have soft tissue mass in my pelvic area. I have been experiencing some pain and discomfort.

I am a little down about this because I think my cancer is quite aggressive. But I will not give up and I am due to have my second round of Topotecan next week and will be hoping my numbers go down. On the plus side I am feeling well and my oncologist is very pleased by this.

Tina xx

Best Friend
Posts: 222
Joined: May 2011

Seems like you can't seem to catch a break. Maybe you should wait and see what the number is after you have another round of Topectan. It could start really working. Why is it that you don't take the carbo/taxol? I do not get it. I am really praying for you. You are one of the kindest people.

AussieMaddie's picture
AussieMaddie
Posts: 345
Joined: May 2011

Hi Tina,

ups and downs seem to be part of this course for us.

I'm glad to know that you are feeling better. I cannot say what it means when your CA125 is up. I suppose we'll have to leave that one for the oncologist to figure out. My CA125 started slowly to go up before I finished the 11 cycles of Carbo/Taxol. The oncologist said that it meant that the chemo was losing its effectivenes. For now, we wait to see what eventuates. I see him this coming week.

Is your pain at all in your pelvis? For the first time, I've noticed - only on one or two occasions - that I've had pain in the left side of my pelvis (about where I imagine that my left ovary would be) It hasn't happened recently, but it was distinct as I lay in bed. Will mention that to oncologist when I see him next week.

For now,

(( hugs ))

AussieMaddie

Tina Brown's picture
Tina Brown
Posts: 1054
Joined: Nov 2009

Yes I have this shooting pain in my pelvic area that comes and goes. Apparently my reaccurance is in this area so that explains the pain. I am really hoping that after the chemo has finsihed they will operate and remove my ovaries etc as that is where most of the cancer is.

Cheers Tina xx

MarisaUK54's picture
MarisaUK54
Posts: 41
Joined: Aug 2011

Hello Tina

I read your comments and are so inspired by your spirit and knowledge. I fumble through, wondering and hoping but you and lots of ladies here know so much. I don't know if I was going for "ignorance is bliss" but sometimes you leave me all speechless; it's great!

Sorry to hear that you feel a bit down but you are so courageous, please keep that up.

Can I now ask a question? You mentioned surgery to remove your ovaries. I had a full hysterectomy with everything removed (tubes, ovaries, omentum, some lymph nodes) in February after 4 chemos, then 2 further chemo's post surgery. Is that not usual practice for PPC then?
I find it all quite baffling although I accept that we are all different therefore treatment is individually based.
Baffled and intrigued actually; it really is quite interesting.

I hope you didn't mind me picking your brains.

Thanks and keep positive,
Marisa

Tina Brown's picture
Tina Brown
Posts: 1054
Joined: Nov 2009

Thank you for your comments Marisa. The more I read about ladies who have surgery the more angry I feel that it was never offered to me. I just thought that was the policy in USA but I know you are in London so, no, surgery is carried out here in the UK too.

I was told that it was pointless doing surgery as the cancer would still be there in and around the peritoneum. BUT I find now that it is mostly in my pelvis so WHY NOY have surgery? I will push for it I think.

I do have the attitude that "yes I have cancer but I have to live with it now" I have no other choice. I mostly try to be up-beat because I think to myself that if I am down and miserable, then who would want to have anything to do with me? The cancer is not going to be cured so I have to make the best of things and hope for a decent quality of life undergoing chemo and then time off inbetween.

Take care and ask me anything.
Tina xx

westie66's picture
westie66
Posts: 642
Joined: Jun 2010

Tina. I don't have Primary peritoneal cancer or ovarian cancer but have had as you know seeding to the peritoneum from gallbladder cancer. I wasn't really offered surgery either (Canada) but rather, aggressive chemo (I'm near the end of the 2nd lot of it). I just can't understand why they can't surgically remove the 5 cancerous nodules I have on the peritoneum. I've obviously had these nodules a long time, just as I had the gallbladder tumour a long time, and don't have any new ones. I was told that there is no point because there would be lots of micro ones. But where are they? Wouldn't they have "grown up" now and be visible?????? Maybe it takes a long time for them to grow. Well then, remove the ones you can see and worry about the other ones later. I realize that chemo may not be effective on my type of cancer (and it is definitely something I'm not enjoying), although it is making things stable and even reducing the size of nodules already there, but ... frustrating! I hate not getting a good answer (probably because they don't know!).
Hang in there, although it's hard to do so.
Cheryl

wanttogetwellsoon
Posts: 147
Joined: Apr 2011

Hi Cheryl...
So far as I know, the nature of micropapillary peritoneal means that the micro stay micro and don't really grow up. So, say for example, the tumour was of a different type. It might form a mass and then that mass can be removed if it's in a place which can be accessed and it doesn't damage an organ or organs - particularly if the growth is confined to a local area. When most of the tumour cells are removed then the patient has been optimimally debulked so far as I know. However, with micropapillary peritoneal seeding, when the surgeons operate, the cells are hard to find and a microscope has to be used. When there are many of them it is very hard to take them all. That's why chemo is sometimes used without surgery. A further complication is that once surgeons operate, very often adhesions form which can cause their own problems. So, I think surgeons look on balance what is best for the patient and whether by removing damaged tissue, tumours and adhesions, they are actually helping the patient in the end or making things worse than they need to be. Having said all of this, I asked my onc why I was having regular scans when the seeding can't be seen. She told me that they are monitoring the abdomen for other things. By this I presume she means that they want to know if the scar on my lung becomes bigger or reduces as a result of chemo. I did have marks on my liver which were not micropapillary. They were thought to be haemangiomas which are a kind of birth mark and haven't changed size in years. However, they seem to be reducing as a result of my treatment which is a bit odd in itself. Chemotherapy is quite an effective treatment for some people but, for me, it's just palliative and is used to try to slow the progress of the disease and to minimise fluid build up... :)

Best Friend
Posts: 222
Joined: May 2011

I know surgery like this is terrible. I don't know from the pain perspective but i know from watching my mom recover who took so long to recover and than they started whamming her with the chemo again. Her chemo before the surgery worked very well. Docs were shocked. I just don't know how they never thought you would be a candidate. Even if the cancer is left afterwards they are removing the major part of the problem and in my moms case they removed her ovaries and such and the doc thinks it started in her left ovary. Why would they leave that there? If i had surgery and it was not successful and than they said let's try again I would be like no way, but u never had it. It's like routine in this type of cancer. Optimal debulking. Please question them as to why! they could have their reasons!

westie66's picture
westie66
Posts: 642
Joined: Jun 2010

HI: More confused now. They (the oncology surgeons) never tested to see if there were micro seeds, they just assumed there might be, for whatever reason. I have a different kind of peritoneum cancer as mine seeded from the gallbladder tumour apparently although not sure how they could tell without testing. Gallbladder cancer (and peritoneum cancer) is so rare that they just don't have enough experience, at least here in Canada where our population is so small. Everyone usually dies of it! The question still remains for me, why didn't they remove the 5-6 nodules that were there and worry about the rest later. I don't get an answer when I ask - they just talk about rarity and how little they know. Sigh. I also have those hema...... thingees on my liver and that is exactly how they described them - a kind of birthmark!
Cheryl

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