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Venting my worries

RosiePosey
Posts: 4
Joined: Jun 2014

Hi Everyone,

I hope this is ok to do here, but I need to get some worries off my chest.  My husband was diagnosed with cancer about 3 1/2 months ago.  Perfectly healthy, no symptoms, working out 6 days a week, and then boom, a seizure at home and a trip to the ER revealed 2 lesions in his brain and one in his lung.  After a week of hospitalization we learned it was 4 brain tumors, not 2.  After another month of testing it was revealed that his cancer was not lung cancer but colon cancer that had metastasized to his lung and brain.  

After a course of whole brain radiation therapy (through which the brain tumors just kept growing, some ending up doubled in size) and a lung surgery (the tumor there caused pneumonia and pleural effusion and collapsed his entire right lung) he began his first FOLFIRI chemo treatment just two weeks ago.  This disease seems to be progressing at a gallop and I am so saddened and stressed by it.  Stereotactic surgery every day last week was done in the hope of slowing down the brain tumors and control the seizures.  

I have been reading through the forums and don't see too many people who have had brain involvement with this disease.  Is it that uncommon?  Is it the norm to have it progress so fast or are the people who have been survivors for 1, 2 or in some cases many more years the exception to the rule?  Don't get me wrong, I am so heartened and glad that many of you have been so successful in dealing with your disease, and I'm sure it's not a small feat to do so.  

I'm for the most part an optimistic and pragmatic person and we have approached this with faith and calm, but I have what I call "my moments" when get just so sad that my husband is only 49 and we are taking this journey.

Thank you all for listening, it helped a lot just to get it off my chest so I can move on to our next challenge.  

I'm praying for all of you here.

Annabelle41415's picture
Annabelle41415
Posts: 4409
Joined: Feb 2009

I'm so sorry that you had to join this group.  Your husband sounds like he is already receiving treatment so that is good.  He must have a doctor that is putting some plan into work.  Keep up with the treatment and it might go forward and backward, but don't give up hope.  You will feel so over whelmed at points that you don't think you can continue, but you must do what him/you feel you can move forward with.  It will ultimately be his choice, but stay by him and make sure you go to all his appointments so you can be his second pair of ears.  Ask the doctors lots of questions and choices he has in every situation.  I'll be praying for your strength and husband.  And thank you for your prayers - we can all use them.

Kim

herdizziness's picture
herdizziness
Posts: 3492
Joined: Apr 2010

I'm so sorry to hear your news of your husband.

In colon cancer, it does usually go to colon, liver, lungs then brain or bone usually.  

When you find yourself diagnosed with colon cancer with mets (metastasized) to lung and brain, it isn't that it came on all of a sudden, it's something that was probably happening for a long time, but unfortunately with colon cancer, (unless you had a scheduled age 50 colonoscopy as recommended and it was discovered) you have no symptoms, until usually diagnosed at that time as a Stage IV, when mine was discovered due to a pain in my side like appendicitis, which brought me to the ER at age 50 I was diagnosed Stage IV and probably had it for years with all the many places, amount of tumors and activity that was found.

The symptoms don't often show until after you have had it for sometime.  So, don't look back at this or that and blame yourselves, healthy active people get it, couch potatoes get it, meat eaters get it, vegetarians get it. And although the government in their ads talk about getting your colonoscopy at age 50 must realize that people are getting this disease at younger and younger ages often without a family history of colon cancer.  It's an insidious disease sneaking into younger peoples lives more and more. There are quite a few here that were diagnosed before age 50 as Stage IV.

Keep your hopes up, your faith intact, and above all else keep th love between you two flowing, colon cancer isn't an easy world to be thrown into.

My best wishes and hopes for you both,

Winter Marie

Yolllmbs's picture
Yolllmbs
Posts: 261
Joined: May 2014

For everyone. This forum has been such a blessing. I'm in total admiration of all the warriors that are fighting cancer with strength and determination. I'm honored to keep everyone in my prayers. Your strength reinforces mine. 

Yolanda

Nana b's picture
Nana b
Posts: 3041
Joined: May 2009

Welcome and like the others said, sorry you had to come here. Winter is correct usually it is liver and lungs where metastasis ends up.  Sounds like he has fast growing tumors, I hope they can control them.   For now, I personally would concentrate on exercise, even if it's in a chair, eat lots of fruit and veggies, limit my meat, take  vitamin D3, to ensure he is getting his sunshine benefit.  He can ask to have it checked, I was short quite a bit, put me on 5,000 units.  Maybe take some tumeric, vitamin c, some calcium. Check with your ONC but mine was fine with it.  Juice and make fruit smoothies, get some greens in powder form like from Trader Joe's (super greens).  

 

I made sure that I was dressed each morning, and not just laying around. Of course I worked 12 hrs days during my first run with chemo in Folfox, and 14 hrs on Xeloda when I said, enough, I need time off. 

 

So work for body fuel, and exercise.  This is what I have read for almost 6 years, fruit and veggies, limit the meat, especially red meat, and exercise any way you can. Juice those greens. There is the Anti Cancer book written by a doctor that had brain cancer and he lived 10 years with it and he did it through diet. We are all different, different genes and some have a better immune system, and we have tumors that grow at different rates  Yes, we are all different, what works for one may not work for another, but what I mentioned is a consensus of what most ONC's say.   Stay Stromg, stay positive, pray (if you are religious), eat healthy, juice, and don't give in to poor me, it's easy to fall into That mode. We need to try and stay normal. Eventually, his normal will be quite different, but we learn to live with it. Can't do as much as we used to do but we try.  One foot in front of the other. 

 

Me:  Stage 4 with mets to liver, Nov 2008

NED (no evidence of disease) for almost four years, then back on chemo June 2012.   I did slack off, on what I was doing but I'm back on track and won't stop, going forward with all my supplements.  I now have 6 tumors instead of the two (the first time), went up to Stanford and having two procedures done, some cyber knife and radiation.  Hoping for good results. 

As as a care giver, you must take care of yourself.   The more active he is,  the better for both of you 

Also, watch the pain meds for possible constipation.   Ducolax and child suppositories is what I used. 

Is is he taking Avastin or Erbitux with his Folfri?   

Sending prayers and good vibes your way.   Hugs!!

 

Raquel 

Cathleen Mary
Posts: 645
Joined: May 2011

Rosie,

The book Nana/Raquel is referring to was written by David Servan-Schreiber, MD And is titled "Anti-Cancer A New Way of Life.". I found it helpful.  

i am sorry that you and your husband are going through all of this...we are here morning and night to share the good and bad. 

Sounds like your husband's team is being aggressive. Never hesitate to seek a second opinion even if just to help you feel that you are doing all that you can.

Prayers for healing and strength.

CM

janderson1964's picture
janderson1964
Posts: 1830
Joined: Oct 2011

I am truly sorry that you and your husband are having such a rough time. Although brain mets from colon cancer isnt as common as liver or lung mets its not rare either. Please vent as much as you need to. This IS the place for venting. We all need to vent and do so here me included.

RosiePosey
Posts: 4
Joined: Jun 2014

Thank you all for your words of wisdom and positive affirmation, what a lovely community!

Raquel he is taking Erbatux along with his folfiri.  His tumor has caused a near blockage and we are in a race to see if the chemo will shrink it before it becomes totally blocked. Since we have had to wait 3 months to start chemo we are going ahead and hoping it will do the job in time, rather than do another surgery and delay systemic treatment yet again.   But if the worst happens and he needs emergency surgery it would be a problem if he was on Avastin so we are avoiding it at this point.

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