My News

fullofbeans · 08-18-2011, 09:01 AM

Hi troups,

firstly thank you all for sharing and for your courage a good example for me and inspiring when things are not going well. Updating you:

The good news:

My lungs mets are stable and slightly reduced and no news mets. I have 9 under 1.2mm now but quite a few around the 1cm mark.

my original lymph node is still 1 cm now and has been basically the same size over the past 6 months which is good (I had cryo on it last july 2010)

I am still on tyk/ herc and now low dose capci (too much diarreah otherwise)

I had 2 chemoembolisation (Frankfurt) in the lungs in the last two months which has stabilised or slightly reduced the tumours. I may do laser treatments like I did for my liver ect.. and will keep you posted.

I am soooo releived to finally have had a good scan and hopefully it is a turning point in what seemed to have been a relentless progression..despite doing everything I could, hopefully more good news will follow.

Bad news the diarreah has led to an extremely painful and debilitating anal fissure, I am writing this from the bath (warm water relax the muscle that goes into spasm ) I have sometimes in great pain for hours after defecation. This pain (added to bad scans for a year) has been very very hard to cope with and wiltered my will but I am grateful for the friends that came around and have supported me I do not know what I would have done without them sometimes joining me in the bathroom (so I could stay in warm water) for a chat!

Also this board and stories help, so I hope this one help too

StephN · 08-18-2011, 10:33 AM

Dear K.

Wonderful to hear you have a stable scan. A good reward for all the scanxiety!

Sorry to hear about the side effect affecting your "situpon." Makes one appreciate a soft stool! Can you have a little surgery to repair that fissure? Hope something can be done before you get completely waterlogged.

fullofbeans · 08-18-2011, 11:13 AM

Yes I want the surgery for the bottom but at the same time I want to deal with the lung tumours first.. I will see if I can then zap which is a priority as one in particular is close to the lining..if if touch it the option will be taken away.

I cannot get to most clinical trial as most require 2cm but if they all get to 2cm..well not good..catch 22

It seems than only direct actions work on them rather than systemic chemo except for the taxane.

Also talking about embarrassing bottom problem has anyone had problem with olive leaf extract? (Oleuropein )

schoolteacher · 08-18-2011, 01:43 PM

Full of Beans,

As always, I am so glad to hear from you. Please, tell me about the lung embolization and the laser treatment you are thinking about doing.

I go to the oncologist radiologist on August the 26th to see about having Cyberknife to the largest nodule in my lung. Do you know if you can Cyberknife more than one place in the lung?

Did you have a lymph node cyberknifed?

I am also taking Herceptin and Tykerb. The loading dose of Herceptin two weeks ago was rougher than my initial loading dose. I am hoping I have had some shrinkage. My HER2 ELISA test was at 51 when I had it taken four weeks ago. I hope it is coming down. Ironically, my estrogen level is only eight. I know there is an inverse relationship between the two. The lower my estrogen, it seems the higher my HER2 level goes.

Hope to hear from you soon.

Amelia

mmoons · 08-18-2011, 03:21 PM

Full of Beans,

I am so glad to hear from you. Thank you for posting. Glad for your good news but also so sorry about your other very painful issue.

I was in a clinical trial for Tykerb and had grade 3 diarrhea for many months. I was a mess down there.

I am hesitant to tell you what worked for me because it is so counter-intuitive. But it was a miracle for me: Psyllium Husk. I know this is normally used for constipation but I heard about it from my Yogi. And it worked. I loaded up on psyllium husk pills and my diarrhea problem was solved.

Your problem sounds very bad and oh so painful. I’m so sorry, FOB!

You are always in our prayers.

Maureen

tricia keegan · 08-18-2011, 03:38 PM

Fullofbeans,

I'm so glad for the good scan but so sad to read of your pain and had this once during chemo so know what you mean!

I don't have advice but wanted to send good wishes to you and I'm so pleased for your result

jml · 08-18-2011, 05:41 PM

Yaaay! Stable is good!
So glad for you. So nice to be able to take a nice big breath and exhaaaale!

I have had GI problems for months & months - from severe diarrhea due to the different chemo combos, then IBS like symptoms including a really hyperactive gastrocolic reflex- as soon as a piece of food touched my lips I would immediately feel like I had to have diarrhea.
And then after a really difficult & painful bowel movement I could spend up to 2-3 hours trying to get everything to stop spasming. Finally I'd just take an oxycontin and completely knock myself out.
If my GI was empty, I was perfectly fine. But if I ate, I would schedule 2-3 hours in case I had an "episode".
I believe it's proctitis w/levator ani syndrome.
Those spasms are OH SO PAINFUL. I'm so sorry you're dealing with that! It's seems like once you get messed up down there, everything is gets hypersensitive and hyper active.
I know you said that you'd prefer to prioritize your lung nodules, but if you're not symptomatic & find some small portion of time to address the fissure, which is a daily problem & discomfort, I'd encourage you to go for it.
I've finally gotten things under control and I can't tell you what an amazing difference it is to feel like every day isn't dictated by my GI.
My GI doc & Onc have started me on a couple of things -
Hyomax - for GI cramping. the directions say to take when you feel a spasm coming on, but I would just take 1 twice a day, to keep things relaxed, and then also if I had a spasm.
Lomotil w/Atropine - lomotil for the diarrhea & the atropine helped with the spasming. same thing, just took it on a regular daily schedule.
Heating pad - I wasn't able to sit in the hot bath because I could get so restless with the spasms. But with the heating pad I could get up and walk around, stretch, then sit on the heating pad again.
Ibuprofen - just seemed to help everything.
Lastly, this is going to seem weird, but when I would cramp up, the only position I could stay in comfortably was "downward facing dog" - it just feels like it keeps the rectum on a slight stretch until the spasm would finally release.
So after each BM, I would take a Hyomax, some Ibuprofen, stretch in downward facing dog, plug in my heating pad, drape it over my low back until I could stand up or sit comfortably, then sit on the heating pad.
And take long breaths and try not to panic and get stressed and tense.
Oh and the most difficult but most important thing for me was to try and get off the comode as soon as I knew my bowels were empty-the longer I stayed there and strained with the urgency & spasms, the longer the aftermath/ "episodes".
I hope something I've shared is helpful to you.
Things are 85% better for me, which is so great & I can only hope that you can find some relief soon!

Keep the Faith~

Jessica

suzan w · 08-18-2011, 08:57 PM

Hey, hi!!! Good to see you here. Great news on the scans, you have worked hard girl! Keep it up!! As for the buttocks...ouch!!!Hope you can find some relief, soon. Life in the bathtub might get old after a while!!! XOX Suzan and Bette (Seattle!!)

Lori R · 08-19-2011, 04:37 AM

Full of Beans,
It is wonderful to hear from you!!! It's been such a long time. Your post was a very inspirational reminder to keep plugging away and the right drug combo just might work.

I am about to begin Herceptin + Tykerb, so your post of good results is certainly encouraging. I definately need a boost of confidence, so thank you for posting.

Not so good about the sore bottom. But, as you've said...first things first. Glad Jessica could give you input on some ideas that worked for her.

Please keep us posted...don't be such a stranger. Lori

fullofbeans · 08-19-2011, 12:19 PM

Jml thank you so much for all of your advice!!!! I can see you know exactly what I am going throu.. I had a good friend wedding to go to in France which would have been lovely and a long break in my fight/anxiety but my bottom prob is stopping me, the idea to be away from home (and warm bath tub) is overwhelming.

Same: the hyperactive gastrocolic reflex (did not know the name, thanks) sometimes a simple bite of food and I would be in spasm/pain/ diarrhea..but like you if I don't eat I am fine (I have lost 10 pounds recently),I am now checking the scale to see if I am not getting underweight..

Does oxycotin work for you? I take tramadol but it does not help even 5 in few hours did not help (figuring i was not absorbing it). if I could have a way to stop the excrutiating pain I could go to the wedding and eat very little/high calory/fatty (i.e little BM) when i do not have the Hyp Gcolic reflex because of the fissure it still very painful..even with no diarrhea.

I know what you saying about getting that sorted but it would delay lungs treatment and like I said one of the tumour is threatening the lining.. don't think i can take the chance.

schoolteach: I have had 2 treatments already.., the last one last Friday. google PTACE/Frankfurt/Vogl for papers and info.

Cyberknife yes you can have more than one lung nodules treated but each is treated separately..I.e. the beam of radiation only treats one area per session..I would think depending on the size of your tumours you can treat 2 to 3 nodules (but check). The number of sessions will vary on tumour size how big are they?

Also if you just have a few tunours around 2-6cm also consider cryosurgery (even having both cyb and cryo not mutually exclusive..), because cryo has more immune response it seem. I beleive that is why my lymph node is not growing, i sometime get sharp pain in it which i take as a good sign that my body is attacking it. Never felt it when it was 2cm.. lots of dead cell with all the antigens act a bit like a vaccination in some cases.

All: thanks for you encouragement. I do not tend to posts about me (but i do about research) when it is going bad just the way I am I suppose.

X

sassy · 08-19-2011, 05:21 PM

Hey Beans,

I had the fissure problem and finally had surgery on it. It made a world of difference. Its a problem that just makes you miserable--lots of times I had to just stand up, couldn't sit because it was so painful. I also had a perirectal abcess that had to be drained and packed. Seemed like two ends of the spectrum for a problem on my "end".

I recommend the surgery--was not difficult to get over and made me feel like a different person!

Laurel · 08-19-2011, 07:33 PM

FOB,
I am so sorry to read of your suffering. It sounds horrible to endure. I pray you find some relief soon. Your friends sound wonderful to come and sit with you while you soak in the tub. I wonder, have you counted all the tiles in your tub surround yet? I bet you have with all the time you have spent reclining there! Wishing you a well posterior and miraculously clear lungs! If you respond to treatment perhaps it will all seem worth the suffering. I do hope so!

Julie2 · 08-20-2011, 07:22 PM

Hi Beans,

Very thrilled to hear about your good scan results. I have the same issue of having multiple small mediastinal and lung nodules. I am tired of using the chemo. My oncologist doesn't suggest the focal radiation/cyberknife for those nodules. How were you able to convince your oncologist?

Thanks,
Julie

fullofbeans · 08-20-2011, 08:55 PM

Julie if you read my signature you will see that I did it for my liver in 2006. I went and did the treatment despite my oncologist advice against it (strongly against it). A top liver surgeon at the Marie Curie hospital where I had a second opinion really tried to scare me off it (despite the fact that she had never heard of LITT before) she phoned me the night before I was due to go to Germany telling me not to go, how toxic it would be ect.. (It was so hard for me I remember crying so much but then what was on offer against my 6 tumours in various places in my liver : nothing but chemo!), so I went.. I know I would have been dead a long time ago if I had listen to my oncologist/second opinion.. I also know other people that have been helped and gained at least years of life.. i was particularly a success, but I have seen other.

This time round my oncologist (a kind man) wished me good luck.. But I know that the hospital still does not recomend people to do that an some oncologist still against..

Also it is a good practice i understand to treat with direct intervention when it is in the regressing phase (hence the chemoembolisation first)

schoolteacher · 08-22-2011, 01:34 PM

Thank you, FullofBeans. I go to the doctor Friday, and I want to understand what I can do about these nodules. I want to lessen my tumor burden. I hope and pray my HER2 level has come down.

Amelia

Elizabethtx · 08-24-2011, 05:44 PM

Good new on the scan and any good news is awesome! Hang in there, sounds like you are turning the corner!

Julie2 · 08-25-2011, 08:25 AM

Hi FOB,

How dod you take care of your internal mammary node? By radiation or chemo? I have one which is pressing the sternum and gre quite rapidly.

Thanks,
JUlie

Sheila · 08-26-2011, 05:29 AM

FOB
Good news on the scans...hoping the lung issues can be resolved quickly so you can get your bottom in shape....my brother had a fissure and was much improved after surgical intervention....
It is hard when we much choose our priorities on which items to deal with first. Sending healing thoughts and prayers your way...you are so strong!

fullofbeans · 08-26-2011, 08:41 AM

Thank you again for your support, and julie I had cryosurgery but I you can have IMRT or cyberknife for it too.. it is a difficult spot ther as you can end up with a pneunothorax (or something like that) if you trying to inject something to it even cryo. Sorry to hear it is currently progressing,

sending love to all