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Reeling from bad news...seems like my Doctor gave up on me

KarenMG's picture
KarenMG
Posts: 109
Joined: Jun 2017

My story is typical I guess. After a couple of years of mysterious miscellaneous stomach and intestinal symptoms, I finally decided to have a colonoscopy that I had put off. I am 62, that was over a year ago in September. Low and behold, they found a mass and said it looked like cancer. I was pretty shocked and immediately felt an impending sense of doom. Saw a surgeon fairly soon who examine me rather extensively in his office and said it looked like cancer and laid out a plan for surgery, chemo, radiation and etc. Not necessarily in that order. I was in shock once again. His exam was close to what I would call medieval torture. Between that and my perception of him, I decided that a different surgeon was definitely called for! I did find a really good surgeon who also seemed very caring and not so overly aggressive. He was in the OR where it counts. Surgery was done to remove about 13 inches of my colon and the reconstructive work they do, it was a "big" surgery. I'm sure the worst surgery that I've ever had and that's saying a lot.

Long story short, I ended up seeing 3 different Oncologists before I chose one, there was mass confusion about my prognosis. One doc said I didn't even need chemo or radiation, next doc said immediately I needed to start radiation then chemo, he was not very optimistic at all about my situation. Final Dr that I am with now is very intelligent and was more optimistic about things. Anyhow, here I am about a year later, post radiation and what chemo I could tolerate. I practically melted down, had symptoms of a stroke with oxaliplatin so only got 5 FU and Leucovorin. Had trouble tolerating any of it and missed 2 treatments but went back to make up one. I blame myself for all the delays due to difficulty finding a doctor I could feel good about and even accepting and agreeing to have any of the treatments period!!! I knew that I have a cranky body and that I would not tolerate chemo well.

A CT scan in February showed two tiny spots on my liver and then after chemo they were gone. I was then diagnosed with Stage 4 with mets to Liver. So my last scan was bad, CEA was up and then scan showed about 10% of my liver to be affected. I don't know if that is bad or good. Funny thing is, which might explain my crankiness with the docs is that I am a retired RN but I feel absolutely ignorant about all this. Haven't worked in 10 years and feel like I know nothing about oncology and how cancer progresses. However I know too much about general illness, enough to make me in a total panic about what might happen to me shortly.

So on the phone 2 weeks ago, my Doctor said I may possibly on have 4-6 months, if I do no further chemo. He called regarding possible immunotherapy that might be available for me and they sent tissue samples off to find out if there is anything out there for me. So far there is nothing that he knows of. Pretty devastating news. I did ask him to tell me what my prognosis is because he has seemed very reluctant to tell me. Next week I seem him to discuss the results of the tissue match for treatment. I forgot the name of the test.

For sure my anxiety is out the roof, my family is freaking out and I feel very lost. I have not felt supported by my doctor and his team. So now it is decision time, whether to do further treatment, especially chemo and lose my hair. Be sick the rest of my life and possibly ending my life with the chemo sooner than if I got no treatments. I don't handle medications well and I feel sure it will be the same thing IF there is an immunotherapy available. As a nurse I worked with many cancer patients through Hospice, I've seen the worst of it all. I never wanted to do chemo, ever. However, I am willing to try treatment if it is not debilitating, but of course I won't know that until I get into it. It's all super scary and frightening. I don't know how I'm going to make this decision. I'm single but have two sons. One cannot even hear about what is happening with me. One sister that is also struggling with it. It's all on me to decide, no one is going to help me. I have had to start taking Ativan, I have nausea a lot anyhow and it helps that. I took it in the past and spent years withdrawing from the effects but now...what difference does it make? I have to have help somewhere.

Sorry to sound so pathetic but this is the first time I have really said all this and I just needed to get it out. I know this site is great for support, the few times I have been here. Thanks to all that have supported me here and would love to hear any thoughts or suggestions.

Karen

 

 

 

 

BRHMichigan's picture
BRHMichigan
Posts: 368
Joined: Jul 2017

So sorry to hear of your situation.  None of us can really make your decisions for you,  but I'd like you to believe there is hope. My only experience with chemo was Xeloda this past summer.  I can tell you that was no way to live.  I have liver Mets too and have chosen alternative therapies for now.  I am comfortable and feel pretty darn good every day.  

I hope you can find peace in whatever path you choose.  And I also believe no one can tell you exactly how many months or years you have left.  Prove that doctor wrong! Praying for you and peace for your family too. 

Beth

beaumontdave's picture
beaumontdave
Posts: 1062
Joined: Aug 2013

This site is exactly for the feelings and struggles you're expressing, and as always, we're sorry you need this place, but welcome a chance to be your sounding board, share what we know, and listen to all the things that the rest of the world won't or can't hear. It's frustrating that the onc's are so all over about your treatments and prognosis. If it's all in the liver there's a few treatments that involve inplanting chemo or radiated spheres directly into it, one procedure called Y-90, which could bypass some of the bad reactions you've had. Those who've had such treatments could better speak to them, but you didn't say they were ruled out, so there are options. Since my colectomy and subsequent liver surgeries had removal as the main option, it was an easy series of decisions for me, but people here with their experiences confirmed my choices and clarified my situation way better then friends or family could have. The Ativan makes sense, I made use of Xanax, and thought it a big help with stressful moments and doc/lab appointments. Ultimately it doesn't sound like you're getting all the options offered to you. and it leaves me believing you should get to a cancer center that will be more aggressive on your behalf.....................Dave

KarenMG's picture
KarenMG
Posts: 109
Joined: Jun 2017

Thanks to you both. You are exactly right Dave, I've been offered exactly zero options at this point. I did casually look on the website of a cancer center in Atlanta to find any type of treatment options. I found one including immunotherapy and chemo. I mentioned this briefly to my doctor in the last phone conversation. He said, well you can forward that info to me if you like. Hmm. So I have not yet met with him to hear the results of the tissue sampling/matching, whatever it is. If he offers me nothing then I have to wonder why. Is it that he feels I have no hope? This is why I stated that.

Lack of communication with both the doctor and nurses, unreturned calls. Consistent delays. All the weeks of postponed treatments. Makes me wonder if this has hurt my case. So in the upcoming appt with the doctor, if he offers no options or treatments that sound hopeful, I don't know how I will make the decision to go with chemo that will make me sick 24/7. I was hoping for immunotherapy options. However, the nurse has failed to call me with a new appointment time. This is how it goes with these people. My doc is incredibily busy but still. I'm just super frustrated.

Thanks again to you both. All I know to do is carry on and try to live what life I have left and pray.

Karen

 

 

Bellen
Posts: 281
Joined: Aug 2016

Hello Karen - Sorry to hear of your current situation.  I have also found that too much cancer care progresses much slower than it should - when someone has a cancer diagnosis, THE WAIT for results, doctor appts, tests, phone calls returned, information, etc is just way too long, and often makes me feel like I am "self doctoring" because it's my only option.  Right now, I feel I am in this position - looking things up on the net, etc.  Cancer clinics should realize the stress this puts on a patient.  And when you don't feel that well, it makes only worse.  I have multiple liver mets, and have had irinotecan (folfiri chemo) and avastin.  I don't know if this is a chemo that you could tolerate.  Wishing you all the best.

Mikenh's picture
Mikenh
Posts: 777
Joined: Oct 2017

You might take a look at TIL therapy at NCI. It appears that MD Anderson is doing some kind of trial with this technology as well.

https://clinicaltrials.gov/ct2/show/NCT01174121

 

Mikenh's picture
Mikenh
Posts: 777
Joined: Oct 2017

1. What kind of cancer are you studying?

We are currently treating patients with the following metastatic (Stage IV) cancers:

2. Who can participate?

The ideal candidate is between the ages of 18 and 70, and is essentially healthy and active with normal heart, kidney, liver, and lung function. A list of inclusion and exclusion criteria for each protocol can be found at clinicaltrials.gov.

Certain clinical conditions (e.g. biliary stents, infection, bowel obstruction, bleeding) can increase complications during treatment and will make potential participants ineligible for an initial screening visit.

Our trials are not for newly diagnosed early stage cancer patients – they are strictly for patients with disease that has not been controlled by at least one standard treatment. Please discuss your unique clinical situation with your oncologist or oncology team.

3. What is adoptive cell therapy? Is it different from immunotherapy?

Adoptive cell therapy is one form of immunotherapy. Immunotherapy is a field of cancer treatment that utilizes your body’s own immune system to attack your cancer, and research is ongoing in many different ways to enhance that attack to make tumors go away. The underlying idea is that your body has immune cells capable of destroying your tumor under the right conditions.

4. What are the specifics of adoptive cell transfer?

For most patients, adoptive cell transfer starts with an operation at the National Cancer Institute. By removing one of your tumors, we are able to find and grow the immune cells that live there, known as tumor-infiltrating lymphocytes or TIL. We will grow and study TIL from your tumor in our labs.

For patients with metastatic melanoma, this process may take three to four weeks. For all other patients, that lab process sometimes takes three to four months, during which time we coordinate care with your home oncologist.

With your permission, our referral team may request samples of your tumor to test for certain proteins of interest.  For cancers expressing those proteins, patients with certain blood typing (HLA) can be treated without the need for an operation. We perform a large blood collection (called an apheresis) and genetically engineer your white blood cells to recognize those targets.

If you are eligible for a screening appointment, our staff will discuss the specifics of each protocol in detail at the time of your clinic visit.

All of our protocols require an inpatient stay of approximately three weeks at the NIH Clinical Center in Bethesda, MD. The treatment regimen consists of chemotherapy, cells, and supportive immune medications.

https://ccr.cancer.gov/sb-faqs

SandiaBuddy's picture
SandiaBuddy
Posts: 1093
Joined: Apr 2017

Karen:

There are countless stories of people who lived well, and well beyond the doctor's prediction, despite the diagnosis.  I am not in your shoes, but I understand your frustration.  The medical community pushes chemo as the only solution, but its effects are horrible for most.  I know that I may face a stage 4 diagnosis at any time, and I am not sure how I will elect to treat it, but at this point in time I do not think I would accept the compromises the current chemo approach requires.  Hopefully others who have more knowledge will share their perspectives with you.  But please be assured, we understand your predicament and are on your side.

KarenMG's picture
KarenMG
Posts: 109
Joined: Jun 2017

Thanks Sandia, Mike and all. I know that I am not the only one dealing with the frustrations. I"m sure others feel like I do, it feels like you are the only one brushed aside or put off.

Sandia I wish you the best! Mike, I looked into MD Anderson, I had planned to go there if ever I found myself in this situation but found out that they do not take my insurance and self pay would be incredibly expensive. I may still consider it.

You all are wonderful and I'm so sorry that you are facing this demon as well. :(

Karen

Mikenh's picture
Mikenh
Posts: 777
Joined: Oct 2017

You might try talking to NCI directly. I believe that they are a Federal Agency but I don't know how they charge people. There is a lady on the Colon Talk forum with username sleen and she has gone through it. Her husband's username is dh2sleen and he sometimes posts about the technical details of what was done. He seems to be the best source on this stuff informally and he keeps up with the trials. His wife made a remarkable recovery from her stage 4 cancer with their immunotherapy approach and she's somewhat of a celebrity in the cancer world now.

KarenMG's picture
KarenMG
Posts: 109
Joined: Jun 2017

Thanks, that is very interesting and wonderful to hear. I need to look into that. I've pretty much told my sons to prepare themselves. Not a conversation I was ready to have but it is what it is...

zx10guy
Posts: 266
Joined: Dec 2013

NCI is a federal agency.  It's a sub institute under NIH (National Institutes of Health) which is under the larger HHS (Health and Human Services) agency.  NCI is the largest NIH institute with funding to match.  Joe Biden's Moonshot initiative is targeted for NCI to accelerate cancer research.

If you are accepted by NCI for patient consultation/treatment, all expenses are paid for by the institute.  In exchange, since many of the treatments are experimental or they are gathering data for research, you're allowing yourself to be their test subject.  I consulted with one of their CRC specialists last year where they reviewed my medical records and they initiated the shipment of my tumor stored at the hospital/pathology department for them to re-examine the tissue.  Their report just confirmed what the initial pathologist had concluded.

Mikenh's picture
Mikenh
Posts: 777
Joined: Oct 2017

Thank-you for your explanation of their funding.

zx10guy
Posts: 266
Joined: Dec 2013

No problem.  NCI not only gets funding through the Federal budget, they also get funding through grants and donations.  

Msmoxie
Posts: 46
Joined: Dec 2017

Hello KarenMG... just a thought..  My insurance was not accepted by Memorial Sloane Kettering until my radiation oncologist wrote the letter specifying why I need to go there.  If you have a good relationship with one of your specialists it is better that the letter be written by them.  I now have the opportunity to go to a cancer treatment center that can think outside the box of "standard protocol"... maybe this will help you.   

I am sending you positive energy and healing energies on your daily mission to find healing.

Moxie

Annabelle41415's picture
Annabelle41415
Posts: 6528
Joined: Feb 2009

I'm sorry to hear all that you have gone through and that you feel like everyone has given up on you.  I'm also sympathetic to the fact that the treatment has caused you so much discomfort and tummy troubles.  There are many meds that can help when you feel sick to your stomach so maybe you might want to explore that issue if you decide to go forward with treatment.  It's a hard decision to make and this has to be your personal decision.  I'm praying for the best.

Kim

KarenMG's picture
KarenMG
Posts: 109
Joined: Jun 2017

You are very kind! My last chemo tx was on November 2nd but I continue to have nausea with stomach cramps and diarrhea. Also Extreme fatigue and feel very depressed and apathetic. No surprise considering the bleak picture my doc painted. I am going to try to be hopeful that there will be a treatment out there for me and continue to fight. I'm not ready to give up!

Karen

Annabelle41415's picture
Annabelle41415
Posts: 6528
Joined: Feb 2009

I'm sure others have suggest this as well, but please get a second opinion or third.  Don't let a doctor treat you as if you "don't matter".  There are other doctors out there that are more caring.  You shouldn't have that many tummy troubles due to chemo being it was back in November.  Please see if there is something else going on.  Please also keep us updated.

Kim

zx10guy
Posts: 266
Joined: Dec 2013

Karen, I've stated to others who have liver involvement where their current medical team has pretty much reached the end of what they can do is to consult with Dr. Nancy Kemeny at MSKCC in NYC.  She has been able to get patients where there was no more treatment available to the point where they were resectable.  She developed the protocol we all now use which is the addition of Oxaliplatin with 5FU to create FOLFOX.  She has also pioneered the HAI pump which sends chemo directly into the liver.

There is another option which you can private message me to get more details.

PamRav's picture
PamRav
Posts: 281
Joined: Jan 2017

it took a good 3 1/2 months before I felt normal again.  I developed all kinds of stomach issues after the chemo ended.  i also had a good deal of tiredness which has be very slowly subsiding.  So what you’re feeling post chemo mirrors how I felt.  Listen to your body rest and eat whatever feels good to you.  Do your best to channel some positive energy.  

Lots of good advice here for you. 

Good luck with your treatment.  

beaumontdave's picture
beaumontdave
Posts: 1062
Joined: Aug 2013

We tend to treat the oncologists/surgeons we engage as the pinnacle and ultimate word on our conditions,  future expectations and options. When my metastasis showed up as a lesion in my liver, I'd been previously assured by my onc/surgeon that it was an easy fix, he smiled and chuckled that the stuff was in there at the start, before the chemo,  small and slow, so slow he said let's wait three months and scan again. Three months and a PET scan later, he was very serious when he showed me a pic and said "you have mets, here, here, and here, what do you want to do?" I almost freaked, containing myself enough to say "I want it the hell out of me". He nodded and said "Yeah, it seems to come back with using chemo or radiation". This was the head of department, top oncologist/ hepatologist, and highly respected, asking me what to do? We set a surgical date, but I left there devastated, feeling hopelessly trapped by a man who's casualness about my life-threatening condition was incredible and shocking. Since it was surgery and I wanted action soonist, I stayed with him, plus my next pre-op meeting was with the associate doctor/surgeon, and she was as wonderful as he was callous, restoring my hope and sense of being taken care of. I rode it out, had one more resection three years later, and am NED for over three years, feeling good enough to fix the big hernia leftover, now healing from that. I think my point is most of us have hit that wall where we're out of options and/or the one we hoped to save us, turns out to be flawed and devoid of empathy for the raging anxiety we feel. I held on and hoped that my surgeon's skill was way better then his ability to give me hope, but had my situation been a little more complicated, or my doctor's second less skilled at reaching me emotionally, I'd sure be searching for options and empathy, even if the optimism was beyond the facts. Truth is important, treatment is important,  but hope sometimes is the only thing carrying us and I'd want to find those who could offer at least some of that..................................................Dave

 

abita's picture
abita
Posts: 814
Joined: Dec 2017

Are you saying that lesions on your liver grew AFTER you started chemo, and they were not there before on the scans?

bridon50
Posts: 1
Joined: Aug 2017

Karen,  

1. What did you do after February's CT scan showed tumors were reduced?  

2. did you have any surgery after chemo? 

3. Have you gone to any Multi-Disciniplinary Clinics?  MD Anderson, Sloan Kettering and Johns Hopkins all have very solid Clinics. They will have an Oncologist, Radiation Oncologist, Liver and colorectal surgeon all together to review your case.  It is a wealth of knowledge and may help tremendously. 

My best friend has stage 4 with mets to the liver.  We also got such different opinions (one told us there was nothing that could be done and had maybe a year) -- but then we went to Johns Hopkins MDC (Multi-Disiplinary Clinic).  He needs 2 surgeries one to remove the liver tumors and the other to remove any area in the colorectal area that had cancer so it doesn't return. 

Hope this sheds some light on this awful time. Keep us updated!

Sue 

Phil64's picture
Phil64
Posts: 835
Joined: Apr 2012

Karen,

So sorry to read about your trials. I do want to encourage you to perservere through! Chemo, radiation, and surgery are viable treatment options. And immuntherapy is an emerging option. And I believe Stage IV Colorectal Cancer can be beat!

There are many types of chemo too, and some depend on the type of cancer you have. In my case they did a KRAS Mutation test and based on the results a type of chemo called Erbitux was used and proven to be very effective in my case.

Like many others on this site I too had to endure through many side effects of chemo treatments. And they were not easy. But the poor effects were mostly temporary and ultimlately endurable.

I do believe finding a good doctor that you can trust is important and then you simply have to trust them. Follow their lead. And pray they make good decisions.

Wishing you a Happy New Year overflowing with Love! And hoping your decisions become clear and your road ahead is smoothe. 

Coachjim
Posts: 16
Joined: Dec 2016

See a liver surgeon ASAP.  An old friend on here had 80% of her liver removed because of the location of her liver met, not the size, and she posted today that she's 9 years post original dx today and six years post liver resection in 2 or 3 months. She didn't have chemo after her liver surgery and has been cancer free.  She's in her late 60's and lives a full life.  I don't know if it's okay to post a link to her blog and I won't give out contact info without her permission.  Send me a message if you'd like her blog link. 

Best of luck, 

Coach 

KarenMG's picture
KarenMG
Posts: 109
Joined: Jun 2017

Thanks for sharing so much info and your story. I just saw my Dr yesterday (Thursday) and what a brutal day! I was so sick I could hardly make it through the visit. I didn't realize the name of the test but I also had the KRAS testing. It revealed that I am not a candidate for immunotherapy, big disappointment, and that Oxalaplatin is the optimal drug. I've already had that drug and reacted severely bad, had symptoms of a stroke on my left side. My doctor said, "I know you had a problem with oxalaplatin in your hands and feet". That's not at all what I had? Concerns me greatly that he doesn't even know that I had such a severe reaction and was actually suggesting that I try it again in smaller doses. Uh, NO! Hell NO! He of all people should know that after an allergic reaction if you take the drug again, you will most likely have a much worse reaction. There was another chemo mentioned but it said results could or could not work. So there's that. I mentioned having surgery or treatment directly to the liver and he said sure I could do that...but he did not suggest it. He keeps stating that he thinks that I do not want to pursue treatments and that he knows that I've tolerated chemo very poorly.

I had a seriously bad feeling about this doctor from this visit. His attitude was very aloof and uncaring and he definitely has seemed to give up or act as if there's no hope for me. My sister also noticed his difference in demeanor. Even being so sick, he did not even do a quick exam or offer anything to help me. I did come home a sleep 3 hours and felt better. It seems to be totally up to me now to plan whatever treatment I am going to do. I'm severely disappointed in him. They did schedule a CT for next week and made an appointment to see a radiologist regarding possible chemo or radiation embolization therapy. This sounds like it can make you very, very ill for a white. I will have to weigh that out. However I do think it is time to rethink this whole thing after my CT and consider getting another MD opinion.

I have had a colon resection, radiation therapy and a few rounds of chemo. I'm extremely tired, sick of being tired and discouraged at this point. There seems to be many stage 4 success stories that amaze me. It doesn't seem to be in the cards for me. I don't know what I am going to do but I just want to not think about it for a while. Meanwhile I will have that CT next week.

Thanks to all for the advice and encouragment.

Karen

Mikenh's picture
Mikenh
Posts: 777
Joined: Oct 2017

What were the results of the KRAS testing?

KRAS immunotherapy testing trials have been underway since 2016 but they are very limited.

KarenMG's picture
KarenMG
Posts: 109
Joined: Jun 2017

The KRAS testing showed that immunotherapy and my tumor were not compatible as far as being able to effectively treat it or improve my situation. Also showed that Oxalaplatin is preferred but I cannot take as I said above Also Xeloda plus 5FU may have potential benefit. There was one chemo that could possibly help but also could not at all, or uncertain outcomes as they put it was Irinotecan. It seems to have minimal side effects but it does cause hair loss. Frown That is something I have avoided so far but I'm sure would be traumatic for me. I need more guidance in figuring out if it would be worth trying. Erbitux or Vectibix would lack benefit.

My doctor did not mention the Xeloda, maybe because I've had such serious GI issues and continue to and at one time my insurance company denied payment on that.

The main thing is that I'm at a loss of what to do as all the treatments have potential very negative side effects for me. Ones that could put me in the hospital easily. I guess it's a decision of how much misery am I willing to suffer to continue to exist.

I feel with every word here that I am sounding super negative. I do want to fight this but within reason. I'm sick every day. The surgery was in November of 2016 so this has been going on quite a while, to be sick non stop. Never got symptom relief since that surgery with starting the radiation and chemo back to back.

If I knew which treatment would be best to start now that might actually benefit me, not just a stab in the dark. My doctor is acting strange and I just am not sure what to think right now.

Any thoughts and guidance here would be appreciated.

Thanks, Karen

 

Mikenh's picture
Mikenh
Posts: 777
Joined: Oct 2017

In general, Immunotherapy for Colorectal Cancer means Keytruda or Opdivo for Microsatellite Instability High patients and generally those with KRAS are Microsatellite Stable or MSS and those Immunotherapy drugs aren't effective. The National Cancer Institute has been working on Tumor Infiltrating Lymphocyte therapy since 2016 and have successfully treated KRAS G12D patients with Immunotherapy but these are trials - not established cancer treatments. This is work to treat KRAS, NRAS, HRAS tumors that were previously untreatable by Immunotherapy using personalized medicine.

Here is their website: https://ccr.cancer.gov/sb-faqs

I was wondering if you knew which KRAS Gene Mutation you have. I have KRAS G12D which is the first gene mutation successfully treated by the new TIL therapy. They are trying to build therapies for other gene mutations now.

This explanation may be easier to understand than mine: https://adventuresinlivingterminallyoptimistic.com/2016/12/07/the-faces-of-successful-colorectal-cancer-immunotherapies-vol-2/

 

Trubrit's picture
Trubrit
Posts: 5193
Joined: Jan 2013

Its all IN THE HEAD and not on the head. 

When it comes to hair loss, Karen, its a mind game you have to play and win. YOU have to tell yourself that you will LOOK GREAT with a no hair. In fact, take the decision away from the medication (when you notice the hair starting to fall out) and shave your head. Make it your choice. 

When my hair started to fall out in the handful, I was gutted. It is devestating. I wish someone had told me to take the upper hand and shave it, but they didn't, and I waited until I looked awful, which mean I felt awful. After I had shaved my head, I felt tremendous. It had become my decision, and that alone made me feel good. 

The picture you see by my name, was the day I shaved my head. 

At the end of the day, our hair SHOULD be the least of our worries, but we're human, and we're vain by nature. So, take the upper hand and if you end up being on a chemo regime that makes your hair fall out, move before it moves, and you will be surprised at how you feel. 

As for all the other stuff, I am so sorry that you react so badly to the Oxi. Its horrid stuff, but effective for the most part. 

I pray you find yourself a more caring Oncologist, and a plan that works. 

Tru

KarenMG's picture
KarenMG
Posts: 109
Joined: Jun 2017

So sweet of you to try to help me out. I know that the hair issue is all in my head for sure. My hair has already thinned out some due to chemo and this whole ordeal. I'm just full of fear right now and feel that any of the chemo treatments are just going to be the end of me. I've seen it happen to others. So losing my hair and succumbing to the effects of the chemo is not how I choose to go out. I'm still figuring out what I am going to do at this point. I do feel rather defeated right now.

You are obviously brave and full of hope. I used to be that way, sure wish that I could get an ounce of that back. I am still fighting right now but I'm running out of steam. I was diagnosed with severe major depression in 2005 and recovered somewhat but that is also what is dragging me down too I am sure. It's just all too much right now. My next move is the CT on this upcoming Thursday to see if the cancer has spread further. I cannot help but think it has. There has been bad news after every event in this fight, it just seems to keep coming and coming.

Early on people told me that I had to have a good attitude about this all to succeed. So if you already tend to have depressive type thoughts and feel doomed from the start does that determine your fate? Am I to blame for the progression of this disease? If so that is truly cruel. I've asked a couple of people this question and got no answer.

Forgive me, I'm just having a rough day I guess.

Hugs, Karen

Trubrit's picture
Trubrit
Posts: 5193
Joined: Jan 2013

It is a life changer.  

Having never experienced depression, it is hard for me to fathom how the mind can turn on itself and bring an individual to such lows. I have known a few friends who have comitted suicide, and it breaks my heart that a person's own body can destroy itself.

As for fighting Cancer over and over again, that alone will whittle away any positive energy you have, and bring you down.  

You do NOT need to ask forgiveness, this forum is here for you to unload and try to find help where help doesn't seem possible. 

It is very easy for me to be 'brave and full of hope' when things are going well. I totally get that, and know, that if I were in your situation, I too would be struggling to find that hope again.  I just don't want you to spend your energy worrying about your hair, when your energy needs to be going toward the bigger struggle. I know its all part of it, this hair loss, neuropathy, acne, sores, uncontrolable bowels, vertigo, oh, the list is endless, and we have to find the umph to rise above it and fight the fight. 

As for what makes a survivor, I personally think that it is just dumb luck. I don't think it has anything to do with being positive, eating right, believing in God, etc. Sure, it might help, but at the end of the day, the disease will do what it wants with your body.  Like I said, that is just my take on things. So I'm saying NO, it is NOT your fault AT ALL. 

I do hope that I haven't caused you any hurt with what might have seemed like a flippant post about not worrying about your hair. 

Friend, Tru

 

KarenMG's picture
KarenMG
Posts: 109
Joined: Jun 2017

I wrote a whole nice response to you earlier and then my computer somehow deleted it....arrgh. Anyhow, thanks for answering my questions. No one wants to entertain such awful questions and answers but it is my reality so it does matter.

I'm glad you are doing well, what a blessing. I do feel like such a whiner and complainer but I have been through so much since October of 2016. Surgery, rounds of chemo and the awful radiation treatments. I don't regret doing all that but I do wonder the value of the latter of the two. You have to wonder. Now this possible treatment to my liver where they inject radiation or chemo directly into it called radioembolization I think. Sounds like it can make you deathly ill with nausea and high fevers. So there's a good chance I may back out of that. My nurse navigator said that she was afraid that I would not handle that physically well at all with my history. Then she called hours later and was encouraging me to do it. ??? This whole thing has gone like this, majorly confusing and frustrating. Oh well, nuff about that.

You are a true angel for sure, thanks for the encouragement. Depression is a bugger for sure. I just fight it one hour at a time sometimes. You definitely did not say anything I considered to be flippant, not at all.

God bless you Tru! Thanks for your kind words

Karen

plsletitrain
Posts: 253
Joined: Jul 2017

No matter how bleak the situation may seem, there's still a flicker of hope somewhere.  I do believe in miracles, so even if doctors say something seem hopeless, I say blah! I don't like doctors telling their patients how long they'll live.  I've seen the unhealthiest people live forever, those given their deadlines outlived these deadlines and some healthy people just suddenly die out of the blue.  What I'm saying is no one knows for certain what's gonna happen tomorrow.  But that's just me.  

Please try to be positive.  I know its easier said than done but please just try to think of your reasons to keep on living.  Keep your mind busy so you can forget the negative thoughts.  That's what I usually do when I'm about to lose hope.  I try to forget the things that make me sad and just focus on the things that keep me happy and occupied.

If you need someone to talk to, I'm just here.

KarenMG's picture
KarenMG
Posts: 109
Joined: Jun 2017

Actually, other than being on here and when my sister called today, I've been watching movies and trying to keep my mind off all the horribleness. I learned the distraction technique when dealing with anxiety and depression. You have to get out of your head! I don't believe the Docs know the time and date, I just wish he would not seem so negative and like things are hopeless. He says any treatment I do will just be maintaining, not curing.

So I do for the most part keep going about my life but still not doing much. I just have this deep down feeling of dread that won't go away. Naps and sleeping is bliss. I normally try not to take ativan or pain meds (narcotics) but If I can't sleep, I really should. There's no need to lay awake and suffer with terrible thoughts.

I do appreciate all thoughts here!

Karen

PamRav's picture
PamRav
Posts: 281
Joined: Jan 2017

But dont get caught up in that word “curing”.  IMO none of us here are “cured”. We all have wayward cells running around our bodies that can cause havoc at any time.  I would focus on maintenance. I don’t see it as hopeless.   Maintaining is a positive thing.  It means you’re  still alive, still kicking. You take the chemo, plow through the side effects as best you can and try to enjoy all the days that are  

Not every day will be good but not every day will be bad either.  Look for the good where you can find it.  And if you can’t sleep by all means dont be afraid to use an aid    

You can do this!

p

 

JanJan63's picture
JanJan63
Posts: 2482
Joined: Sep 2014

I haven't read all the replies so I might say something that's already been mentioned but I'd like to chime in. My main reason for being on this board is to provide hope when I can. It's also great for any questions I or anyone else has. Knowledge and experience from people who've been there far surpasses what my doctor has been told by the other patients she sees for about ten minutes or the old or wrong information on line.

I didn't even see if you got your tissue results back yet, I'm sorry. I'm having a bit of a bad day with a hip aching and I want to get off the computer as quickly as possible. The test sounds like what my onc did. She had my tumour tested and found that it's vulnerable to one of the immunotherapy chemos. So I was on it last summer and will be on it again soon. It did shrink the tumours in my ling which is what I'm dealing with now. Not a lot but it did work. The only side effect was some fatigue and a rash on the head, face, neck, back and chest. Ugly but worth it.

If oxyplatin was my only option I'd be like you and probably not do it. I can't anyway bceuase last time it gave me a blood clot along with a stroke and cardiac arrests. The fact that I'm still here is a miracle because of it. Plus it's just a miserable chemo to be on. I was on an oral one before the one that causes the rash and had no side effects whatsoever. It also did nothing and I got another tumour while on it.

I was told a couple of years ago by my onc that my cancer will never be cured, I will just live with it. Like people with other afflictions do such as diabetes. It's never going to be gone but we treat what we can and deal with what it brings. I was quite upset at first. I wanted the NED designation so badly but I got over it and now I'm just happy to be here and for a while longer. At this point they estimate I have maybe 9 or 10 years left. Unless something else gets me first. I'm going to be 55 soon so that's not terrible. I always said I didn't want to get old and dependant on others. And a cure might be found in that amount of time.

Regarding your depression, I totally get it. My onc wanted me to go on antidepressants in the summer but I wanted to tough it out. Now I'm on Prozac after being so depressed I was hoping I wouldn't wake up most mornings. This came from having septic shock in September that complately put me on my butt and I couldn't seem to get over that. Medically they could find nothing wrong but I was so weak I'd spend my days in bed or lying on the couch. I got so depressed I naver came on-line, I even shut my phone off for days at a time because I didn't want to talk to anyone. I also didn't bathe for weeks or wash my hair. I didn't read ot watch TV and I usually read a book every week or two. Classic depression. I was also really upset because my husband- who has been my rock during all of this and done SO much for me- had a heart attack the same day I went into the hospital and I was too sick to go see him after I got out. So he had triple bypass without me being there for him. That really upset me.

I take a sleeping pill to sleep every night. It's a prescription one and if I don't take it I lie awake having dark thoughts. I don't need that crap and neither do you. Do whatever you can to get a good night's sleep. The antidepressants have mostly taken away my dark thoughts, though, so that's wonderful.

Sometimes I have to take painkillers to sleep as well. Whatever, it's just codeine and I'll take one if I need it. It's all about quality of life, not quantity. I don't have anything that is addicting and I only take a few a week.

A couple of the things my doctor had me do when he gave me the antidepressants were also helpful for the dark thoughts. When I get them I'm supposed to take five deep breaths. It's surprising how doing that makes you focus on it and kind of snaps you out of the bad stuff. I also have to think about someone, anyone, and sincerely wish them a good life with success, happiness, health and all those good things. It can be a pleasant clerk at the store, someone walking by with their dog, someone you do care about, whatever. The thing is it releases chemicals that bring your mood up and makes you focus on something positive. Another one is to try to switch your negative thoughts to positive ones. I also learned about this in a cancer weekend getaway group. It's called mindfullness and is very much like meditating. Every time I think about bad things, which I was doing a lot, I force my mind to think about good things. It can be as small as seeing how the light plays on the frost outside or seeing birds eat at our feeder or, for me, petting my dogs and telling them how much I love them. Or it can be huge like remembering my trip to Paris or riding my horse or how proud I am of my daughter and her accomplishments. It's somethging I learned to do when I was paralyzed after I came out of the coam after the blood clot and stroke. I was so depressed to not be able to move and I taught myself to focus on positive things. I didn't realize I'd learned mindfullness until I was at the cancer retreat.

I'm sorry this is so long, I just really felt like I had to reach out to you. Maybe it will be helpful for somoeen else on here, as well. At this point I'm proud of myself for what I do and have done. Even if I don't do much I tell myself 'not bad for someone with stage four cancer!' I think it's important to know that you can live with cancer. You can live and live well. You are not your cancer, it doesn't define you. Do not allow it to ruin the life you still have. That's not letting it win. Cancer or something else will get all of us eventually, we can't live forever. But don't let it win while you still live. Do whatever you have to to live longer and enjoy life. Depression is not enjoying life. To hell with that crap, live and stick your tongue out at cancer. Everyone has the possibility of getting it, almost 50% of people will. So what, we all have burdens to bear and we know what this one is. Things can always get worse or be worse.

I learned that lesson when I was in the hospital recovering from my stroke and had got to the point where I could be in our local small town hospital. I had recovered to the point where I could walk a few feet but was mostly in a wheelchair. I befreinded a guy a year older than me who had MS and couldn't only move a couple of fingers and talk with difficulty. I was the lucky one. Yet he had this awesome postive attitude and sense of humour. I have a friend who's son was born with spina bifida. He'll never get out of his wheelchair. He's 25 now and is one of the most positive people I know. Just being around him brings people joy. He now writes a column for our local newspaper so he even has a job. If I get really down I think of them and am ashamed that I was almost suicidal a few months ago.

Karen, don't let cancer get you down. As long as you are alive there is hope. Some chemos are crummy but doable, some aren't bad at all. Don't let it take the life you're living. Don't let it have that. Cancer is a demon and I'd love to torture and kill it, it makes me so angry. But I will not go down without a fight and I will not let it ruin whatever time I have left. I almost did and it angers me now that I almost let it. Today I'm still not feeling strong but I'm almsot back to being me and I will get there and cancer can go **** itself.

So please do whatever you can and whatever it takes to LIVE and live well. And please message me privately if you'd like. I completely understand. I love telling people that I'm stage four cancer and seeing their surprise. I think it's important to let people know that you can live with it. Not that I go around bragging about it or bring it up but sometimes it comes up. I like knwoing that I'm tough and alive. Someone posted a meme on Facebook the other day that said something like "Someone told me they don't know how I do it. I told them I wasn't given a choice". I really liked that. But I love this quote "I hope, or I could not live" I wish I could remember who said it.

Hugs,

Jan 

 

 

JanJan63's picture
JanJan63
Posts: 2482
Joined: Sep 2014

Sorry for my looong post! Once it posted I realized how long it is. Kudos if you can get through it! 

One more thing regarding miracles. Just over 3 years ago I had the blood clot- pulmonary embolism- that almost killed me. I was in full cardiac arrest when the EMTs arrived. I've spoken to them since and they said it took over ten minutes to get me going and they were going to give up when I finally stabilized. I had seven cardiac arrests in total. Once I was at the hospital I had a stroke, a brain bleed bewteen the hemispheres, my brain swelled to where they were going open my skull and then it stopped, my kidneys failed, I went into a coma, the neurologist suggested to my husband and aughter that they let me go because I'd never be the same mentally and would probably be in a nursing home at best. I survived and was fully paralyzed when I came out of the coma a couple of weeks later. I recovered to about 85% and nobody would know anything is wrong with me now. While I was in the ICU the doctors told me that they had no explanation formy recovery and that I'd received a miracle. They said I'd had about a one in a thousand chance of making it. But here I am. So miracles can happen.

Hugs,

Jan 

KarenMG's picture
KarenMG
Posts: 109
Joined: Jun 2017

Thanks for the posts and sharing your story. Wow, you have been through so much and yet seem to have a great attitude! That's so wonderful. I know that I have a stinkin attitude but I know that I am not letting this all beat me and that I'm still fighting!!!

Maybe I learned the negatitivity from my dad, he went through so much in his life and yet he lived to be 91! Some days I feel very sick, even off chemo but others I am still very much kicking and not feeling like death is imminent. I've been through a whole lot even before this battle.

I fought to get through nursing school and that is not easy. That medical background may also be a cause for my negatitivity. Doctors do tend to be on the negative side, that's just how you become after seeing so much I guess. I fought through a severe mental illness and recovered and a four year benzodiazepine withdrawal nightmare. Now I'm back on the junk, but hey, it's survival now and I need my rest. I never did get back to sleeping more than 4-6 hours a night straight after benzo withdrawal. Now, I am tired and I intend to sleep with whatever I have to do. Even though the meds make me cranky a lot.

I didn't mean to go into all that but I do sort of relate to all your medical trials. It's amazing what we can live through and survive in regards to illness.

One last thing is, as I said I am sick with nausea and diarrhea pretty much daily without being on chemo. So the prospect of starting chemo again is something I really do not want to do at all. The one drug I might could take other than oxalaplatin does cause hair loss and severe diarrhea. So I don't see how I would be able to deal with worse diarrhea, it could be my nursing background that is making me more fearful about doing any further chemo. I forgot the name of the one drug that was the other option. So not too many choices left for me, other than possibly that embolization therapy.

Anyhow Jan, I really appreciate your support and would love to hear more from you.

Take care, Karen

linda7408
Posts: 21
Joined: Mar 2018

Karen, I started with rectal cancer and had the APR with flap surgery. I had FOLFOX and had a reaction to it. Thought I was good to go but it seems it has scattered all over both lungs. Very aggressive.  The chemo Folfuri is what I will be taking for 6 months. It does not have that drug in it that FOLFOX did. I also am starting taking REIKI, and all sorts of concoctions that an herbalist made up for me. There is learning how to use your body to heal yourself. I am doing all that along with the chemo. Please make sure you speak with a surgeon about your liver. Many people get parts of their liver removed and it regenerates itself. I can't give up at this point because there could be a new drug or something approved 2 months from now and I don't want to miss out.  What hospital are you working with?

 

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