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Wenchie -are you out there?

dmdwins
Posts: 453
Joined: Aug 2008

Just concerned that I haven't heard back from you recently. How are you holding up? Have you started your chemo of gotten another opinion after M.D Andersen? Please check in and let us know how you are- We care!!

Dawn

Wenchie
Posts: 88
Joined: Apr 2009

Hey Dawn!
Thanks for checking on me. I saw a Radiologist yesterday who will perform a lung biopsy on me a week from Friday. I need the biopsy in order to get into a clinical trial for "hedgehog". It's a double blind study and I can only hope I get the real thing! I start Folfiri shortly after the biopsy. I had Folfox when I was a stage III and will have Folfiri now that I'm a IV. Did you have Folfiri and how bad was it? I breezed through Folfox, no diarrhea, no hair loss, very little nausea. I fell off the wagon this weekend and ate everything bad for me so as of tomorrow, I'm back on the cabbage, asparagus, turmeric, soy milk, etc. I am starting to get a little congestion but I'm not sure if it's the lung nodules or allergies. I've had these nodules for 7 months so far with no intervention. I think I'm ready to get this chemo going! How are you doing?

dmdwins
Posts: 453
Joined: Aug 2008

Glad to hear from you and sounds like you are getting the ball rolling. I will keep you in my thoughts and prayers for your lung bx AND that you get the real thing!!! I have not heard of the Hedgehog trial what will that entail?

I had Folfox and Avastin so no idea about the Folfiri but I bet there are others who can comment on that.Glad to hear that you breezed through the folfox. It was pretty tough on me but I made it through all 12 treatments with some dose reduction and a week or 2 off to rebound.

Don't beat yourself up about falling off the wagon we are all human and it takes time to change our ways.Just do it a little at a time.

Take Care,
Dawn

CherylHutch's picture
CherylHutch
Posts: 1399
Joined: Apr 2007

Hey Wenchie,

I wouldn't worry that it's the lung nodules that are causing congestion... more than likely it is the annual spring allergies. Even people who have never had allergies to pollen, etc. can seem to get the sniffles and congestion in the spring.

As it was explained to me, lung mets don't have any symptoms until they get rather large... around 50cm or larger. SO, the fact you have known about the nodules for at least 7 months and have not needed any intervention, then I am guessing that your nodules are still quite small.

I haven't heard of this "hedgehog" trial either... what is that?

I also have nodules in both my lungs. I call them nodules and not mets because, although some of them will definitely be mets, we don't know yet how many of the 11 are mets or scar tissue. They are also growing so slowly (some haven't grown at all) that they can't tell yet. So I have been without chemo intervention for almost 18 months... and this is a good thing :) The longer I can stay off chemo, the longer we can keep it as a backup plan should the ones that are mets start to grow. If they only grow one at a time, then the lung ablation (RFA) is another option that we may use again.

Anywho... do let us know how the lung biopsy goes and what the plan is going to be.

Huggggggs,

Cheryl

Wenchie
Posts: 88
Joined: Apr 2009

Thanks for you input regarding the congestion! Go to the clinical trials website and search for "hedgehog". It's pill form but it's also a double-blind study so neither me nor my Oncologist will know if I'm getting the real thing. While the Avastin stops the tumors from forming their own blood supply, the chemo will help kill off stray cells and the hedgehog "supposedly" actually targets the tumors and kills them. It's only a second tier study so they don't seem to have stellar results but I'm encouraged that it obviously did something good in order to get to Tier 2. Cheryl, have you had any chemo in the past? I was seriously thinking about delaying chemo even longer since I have no symptoms and I feel great but...I don't think I can get the hedgehog without the Folfiri. What have you two taken in the past? I'm still having a really rough time trying to be optimistic and have started cleaning out my house already! You two are wonderful and I hope to get your attitudes!
xoxo

dmdwins
Posts: 453
Joined: Aug 2008

Interesting that you should mention cleaning out your house. I too felt that I needed to get the house in order, go through my clothes, and throw out a bunch of stuff so to make less work for my family.Sounds similiar to the nesting instinct when getting ready for a baby!! But not for as happy of a reason. I wonder how many others have felt this way also? So the way I figure it -we will get better-live with this cancer thing AND have a cleaner house!!!

Hang in there. It is hard to be optimistic all the time. We all have our days, weeks,months. Remember the "calling all Stage 4" post- there are many out there doing so well. I wrote that post that day because I was having a down day and needed a boost. You CAN and WILL be able to do this!!!

Smiles,
Dawn

CherylHutch's picture
CherylHutch
Posts: 1399
Joined: Apr 2007

Hey Wenchie

You asked "Cheryl have you had any chemo in the past?"

You betcha I have :) I had 10 treatments of FOLFOX (Oxipilaptin, Leucorvin and 5FU), 2 treatments of Leucorvin/5FU without the Oxi, 6 weeks of daily radiation and while I was on the radiation, 8 weeks of Xeloda (pill form of 5FU). All totalled, I was on chemo for 8 months.

It was after the 8 months of chemo that we found the cancer had spread to the right adrenal gland and the lungs. I had surgery to remove the right adrenal gland (ouch, ouch, OUCH!!) and now we are in wait mode to see what happens with the lung nodules... and how many of them are going to do anything. There were 12 in total, of which some have not grown at all. The largest one (19mm) was ablated with the RFA procedure and went without a hitch. Now I have 11... but they are pretty indolent at the moment (aka very lazy and extremely slow growing, if growing at all). Statistically speaking, a good percentage of them will probably be cc mets... but they are too small to biopsy at this time and we don't know how many are mets. So, until they start growing, there's nothing that can be done... they are too small to be affected by chemo, so no point on going on chemo knowing full well the chemo won't do anything to them right now.

If they do start to grow, we shall deal with them when they do. If only one or two grow... we'll probably ablate them. If they all start growing, then we'll go on chemo (probably FOLFIRI with Avastin). But my onc does not want to put me on chemo until we know it's going to be of some benefit.

Everyone is different so a plan that might be great for me, might not work for you. This is where you have to work with your oncologist on what would be the best plan for you... and why.

Hope this helps!

Cheryl

Wenchie
Posts: 88
Joined: Apr 2009

Your treatment plan is very interesting. I too had radiation and Folfox but as soon as they spotted the nodules in the lungs, they wanted to put me on Folfiri and into the clinical trial for Hedgehog. I'm working with an Oncologist from Sloan and he and my Radiologist both recommended Folfiri immediately to try to catch as many cells as possible (apparently they fear they'll go to the brain next since the cancer is now systemic). I checked into the RFA and was told it was a possibility after Folfiri (apparently one nodule is sooo close to the heart and that's their fear of treatment with RFA). I had 5 nodules at last check (Mar. 1 @ MDAnderson) with the largest at 7 mm (was 4 in Jan). I'm having a lung biopsy next Friday on the largest nodule and I'll let you know what they say. I sure wish I knew if it was better to sit, watch and wait or go for the chemo asap. Don't you just get sick of the zillion different opinions. I visited MDAnderson (not impressed), talked and sent films to Mayo, Sloan, Johns Hopkins, Univ. of Pitt, and Moffitt and everyone has a different opinion. I'm just not sure of myself and what to do feeling as though I'll use up my last defense of chemo with the Folfiri and have nothing to use for a 3rd attack and I'm also afraid to wait and have other tumors show up in the brain or liver. What the heck! You sound great and I'm you're stable! What do you think about treatment versus waiting?

CherylHutch's picture
CherylHutch
Posts: 1399
Joined: Apr 2007

I just realized I might have been a bit misleading in my description of the treatments I've had up to now. The radiation I had was not for the lungs... they radiated my abdominal wall because originally, an abscess had formed around the tumour and that abscess was attached to the abdominal wall. So when they removed the tumour, 18 inches of colon and the abscess, my surgeon marked where the abscess was attached with metal clips to the abdominal wall so that the radiation oncologist knew exactly where to radiate.

The Oxy/Leucorvin/5FU and the 6 weeks of Xeloda (while I was on radiation) was the standard chemo cocktail for Stage III colon cancer. They were bombarding me with as much as possible to stop/kill any cancer cells that may have escaped during surgery.

Two months after I had finished the chemo, my CEA was "slightly elevated". A month later, it was elevated a little more... so my onc ordered a PET scan. That's when we found the cancer had spread to the Adrenal gland and the lungs. We have no idea if the spread happened prior to the 8 months of chemo, during, or after. The removal of the adrenal gland got rid of that problem so now we have the lungs to keep an eye on.

No new nodules have shown up. We don't even know how many of the 11 are actually mets or not and they are too small to biopsy or do anything with. The one we are keeping an eye on is 6-7mm (it's the largest) but it has only grown 1mm since Aug, so it is not growing in leaps and bounds. The rest are under 5cm. None of them show up on the PET scan, so none are metabolically active at this time.

Now, I can't advise you on suggesting going for the treatment versus waiting... that would be extremely wrong of me to even contemplate doing. You see, although our situations sound like they are very similar, they can be as different as night and day. Not being a doctor, I certainly can't give advice based on what I have heard here and not based on the results of scans, CEA and the multitude of other factors that oncologists base their decisions on. I can only report on what I know of my own situation and it's quite probably that I've missed out some key factor, or maybe a factor that made the decision for my oncologist that I don't remember or was not aware of.

I do know that if there are any signs that the nodules are starting to grow and become metabolically active, the plan will be that I go on FOLFIRI and Avastin. That's the plan as of now, but as my oncologist said... let's cross that bridge when we get there. For all we know, by the time there is any activity that we have to be concerned about, there might be a different combo of chemo that we should try.

The reason we are waiting is because the growth rate of any of my nodules is so slow, they are barely growing... and may not be growing at all. Any difference in size is so minute that it could just be the difference in the angle each CAT scan is taken. Also, other factors like CEA. My CEA is a very good indicator for me, and it is totally normal and not showing any difference. So between the no (or very little) growth, the slowness, the CEA, the inactivity on the PET scan and whatever other factors she has, my onc is preferring to not do anything or cause any upheavel but to save the chemo until we actually need it.

All it would take is for ONE of those factors to be different or a new factor to come into play and our plan could change drastically. So that is why I can't advise you on whether to go for treatment or wait because I am not qualified to even begin to contemplate that. I'm sorry I can't be of any help... all I can suggest is you pick an oncologist you feel comfortable with and trust their judgement, then the two of you go over the pros and cons of treatment vs waiting and come up with a compromise. :/

Huggggggs,

Cheryl

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