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Latest update from IV-ville

derMaus's picture
derMaus
Posts: 559
Joined: Nov 2016

I haven't posted an update lately because I don't have much to tell, but am in so much pain right now that I decided to vent anyway. Thank you for bearing with me. My lower back pain was increasing alarmingly, but I attributed it to my 'usual' sciatica. Boy was I wrong. About 3 weeks ago my right thigh went numb and walking or standing for any period of time because excruciating; a lumbar MRI revealed that the new pelvic tumor is pressing on my sciatic nerve and growing hella fast: it went from 8 cm in early April to 14 cm two weeks ago. That certainly explains the pain. Unfortunately it's now WAY too big for another round of CyberKnife and surgical removal is the only option. The first surgeon (my original one, who I can't stand) refused to even consider operating as I could lose bowel function and leg function, and said...are you ready for this... I would "only gain a few more months". WTF kind of thing is that to say, especially to someone with a tumor that isn't even in an organ? Fortunately my wonderful new oncologist found another surgeon at the City of Hope, who had a different approach.

The orginal plan was to have more radiation to shrink the tumor prior to removal, but she vetoed that idea, saying radiation would make the tissues too brittle to work on. (It's worth noting that the new tumor is in a spot that's never been radiated, so it's untouched territory which is better for post-op healing). Instead, while I'm open on the table, she wants to do intraoperative radiotherapy (IORT). Apparently they shove your organs - bowel, etc. - out of harm's way, then scour the tumor bed and margins with high dose radiation. I'd never heard of such a thing but apparently people on the ovarian board have had it and the results are often good. She's hopeful - but not confident - that she'll be able to get all, or at least most, of the tumor but this adds a level of safety, She wants the head of surgical oncology to take the lead with her assistance, so we're waiting to see if he's willing and able to do so. I can't have this done fast enough; I've never, ever been in pain like this before and am starting to see how people just give up after awhile. Please forgive me for sounding melodramatic, because I know many of our sisters have it much worse than I do, but the Valium, Vicodin, Percocet, Tramadol, etc. etc. ain't really doing much. Dilaudid or a patch are next on the list, but I'm worried about depleting my body's resources before surgery and I can feel my spirits going downhill by the day. 

As I said, I don't really have any new news but just wanted to vent. Thank you all for being there and letting me do so. Love you all, B

CheeseQueen57's picture
CheeseQueen57
Posts: 804
Joined: Feb 2016

I’m sorry you’re in such pain. It clouds everything and it’s hard to see tomorrow. I hope they can find something to give you relief. I hate this cancer. It’s like a sneaky enemy. You never know where it can pop up. How soon can they do surgery? 

Soup52's picture
Soup52
Posts: 902
Joined: Jan 2016

I’m so sorry that you are going through this! I pray that the radiation will work for you. It sounds like you have a good team looking for the best options. You confirm what we all often fear in that is my new pain mor cancer or something else. Many prayers for you for pain releaf! 

MAbound
Posts: 863
Joined: Jun 2016

Oh Barb! This is not what any of us want for you. I remember all too well the unrelenting pain I had during chemo with severe neuropathy and couldn't imagine living with it forever and never even being able to sleep again. It was scary times and I'm praying really hard that this can be relieved for you somehow. We endure so much fighting this cancer, but having to suffer through intractable pain is everyone's greatest nightmare and fear. Sending prayers and hugs that this problem will get solved very soon! Pat

Tamlen's picture
Tamlen
Posts: 192
Joined: Jan 2018

I'm SO sorry you're experiencing such excruciating pain, derMaus. But relieved you've got a team now that you feel confident about and sounds like it has a sound plan. Good to get rid of a surgeon you hate -- dealing with him would take energy you need for more important things. Please keep us posted when you can. We're all pulling for you.

barnyardgal
Posts: 212
Joined: Oct 2017

I am so sorry you have so much pain. Your new surgeon sounds like she has a great plan and I hope it can all come together very quickly so you can have relief from that pain. Sending up prayers for you.

EZLiving66's picture
EZLiving66
Posts: 1345
Joined: Oct 2015

Oh Bobbi, I am so sorry you're going through this!  (((Bobbi))) But at least you found a surgeon who has a plan to alleviate the pain and maybe provide an answer to stopping the growth. I wish there was something more I could do but offer you my good thoughts.

Love,

Eldri  

gbazyl's picture
gbazyl
Posts: 23
Joined: Feb 2018

Bobbi I hope you can find some comfort with your pain.  Have you tried smoking pot and cbd?    Sending healing energy your way...you are in my prayers.

takingcontrol58
Posts: 238
Joined: Jan 2016

DerMaus,
I am sorry to hear about the pain you are going through.  I'm sure it has
been very frustrating for you. I know you are working with a naturopath and are on metformin.

My first thought as I read your post was that if cancer has continued to grow
in your body, you have not yet determined all the root causes that are
causing cancer to form, all the toxins in your body.  Normal cells become
cancer cells when they try to survive in a toxic environment- that is when
they mutate in order to survive and can go on to form a tumor. Remember,
cancer cells are just normal cells not following their cellular instructions. So
you need to get them to behave.

Have you been monitoring your ferritin levels?  Stored iron?  It is a key driver
of cancer and cancer cells love iron.  Women in menopause are at increased
risk of iron overload.  It is often used as a cancer marker to evaluate the success
of your treatment.  You probably need to start eliminating all possible risk factors
that could still be present. Also, standard cancer treament (chemo and radiation)
add more toxins to our body and are known to cause more cancer. It is well known
in the medical community. I personally believe in limited standard cancer treatment.

I recommended a book previously on this site "Cancer is not a Disease, It's 
a Survival Mechanism" by Andrease Moritz.  I really think this book might be
helpful for you.  It will give you a whole new perspective on cancer.  It certainly
changed my perspective that cancer isn't out to kill us.

Also, if you are considering more surgery, it is very important to boost your 
immune system prior to surgery, as surgery spreads cancer (I wish I had
known this before I had surgery).  The best immune boosing supplements
are the medicinal mushrooms- Maitake D fraction, Coriolus PSK, Shitake and Chaga.
Surgery creates all the processes that fuel cancer- it compromises the immune
system (anesthesia), generates inflammation and removes all the natural barriers in
our body that protect us from cancer as they cut up our organs.

I would be happy to provide you with the names of more specific supplements I use
that are known to be cancer killers.  Many are known anti-inflammatories.

Takingcontrol58

evolo58
Posts: 293
Joined: Dec 2017

DerMaus ... it sounds like you're in good hands with this second surgeon. You do NOT need a surgeon around who thinks, "Oh, what's the use?" As far as I'm concerned, jerks like that guy are unfit to practice. If you want to fight this beast, your surgeon needs to show the same committment. Looks like your surgeon wants to attack this thing and while not sugar-coating, is taking a good positive attitude, but is placing your quality of life at the top of the list of concerns. Sounds like a keeper to me!

So go your surgeon and go you! Hope your pain subsides and the beast is finally gone.

Northwoodsgirl
Posts: 529
Joined: Oct 2009

You are going through so much! That oncologist was rude! I agree with the others that it is a good thing you have a doctor who is more supportive. Oh how I wish I could make cancer dissipate off the face of this earth. No one really knows the pain and anxiety until they themselves have experienced what you are going through. Vent again so we know you are fighting this damned cancer! ((HUG)) 

Grace and peace...

Lori

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1535
Joined: Jun 2015

Sweet B - Thanks for posting! What a nightmare for you. I'm so sorry and no words can ever be enough to express how badly I feel for you. I'm glad you found a caring, supportive and smart doctor to get you through this next hurdle. I know you will fight this and come out better. Please come back as often as you can to update us. You are and will continue to be in my thoughts and prayers.

Love and Hugs,

Cindi

linmk's picture
linmk
Posts: 58
Joined: Sep 2017

I appreciate knowing the truth even if it's not pretty. I'm glad that you found a gyncological oncologist and surgeon you're comfortable with. I'm sorry that you are dealing with so much pain. I have been dealing with some lower urinary tract pain. I took over the counter AZO and have been eating a clove of crushed raw garlic each day. It seems to have helped. I go in for a CT scan soon, and will learn more after that. I hope that your doctors can do something that will help control your pain. Thinking of you fondly and wishing you the best, fellow IV-ville traveler.

Donna Faye's picture
Donna Faye
Posts: 242
Joined: Jan 2017

 Know how you are feeling. Just had my 3 mo. check after the rads and cisplatin and dang if she did not find another bump on the wall, again! As you know, not what we want to hear. Because I am not very far out from the radiation, we are waiting 6 weeks to biopsy, but, if C - then surgery as am radiated to the limit . Told it is very close to rectum so surgery could have problems. Your posts always help all of us learn something. I am so sorry you have to be the first in line for some of this, and you have every right to vent and rant. Sometimes we just need to go out into the country and scream and shout and stomp. Like you, I have never had to deal with much pain and when it is constant, it weakens your spirit. And that doc needs to find a new line of work. Please stay as strong as you can and know we are all cheering and praying for you to get past this.  I wish words had magical power and these words would send your pain away. Hoping for the best for us both and all the others on this board.

Jairoldi's picture
Jairoldi
Posts: 206
Joined: May 2017

What a tough road you are travelling right now. May the next turn bring s smoother path. So glad you have another surgeon to craft a better plan.

Wannabeatit
Posts: 97
Joined: Dec 2017

Some people should never become doctors! There are always new strategies to try and some of them actually work. He has no right putting his out dated opinions out there. Glad you dumped him. I am constantly hearing survivor stories. You will be one of them. 

SF73
Posts: 264
Joined: Oct 2017

I am so sorry that you are experiencing pain. Through so much pain you still managed to find someone who has the competence and vision to help you. The first oncologist's behavior is not acceptable at all. I am wishing that you come out of this surgery with a NED status. Is the new oncologist saving immunotherapy for maintenance after the surgery? I guess that would make sense.. to first lower the burden and then attacking whatever is left (if anything is left) with the immunotherapy. Please know that we are all thinking of you and wishing you the best. 

SF73
Posts: 264
Joined: Oct 2017

When I am feeling down, reading survivor stories helps me. I think I have read many of the survival stories on this site. When I ran out of stories, I looked around and found a website called Inspire. They dont have a lot of people who have uterine cancer but they have a big community for ovarian cancer. They have an annual survivors update around valentine's day (Something we should consider doing so that all the positive stories is in a single place). I love reading how even people who had multiple recurrences achieve complete remission. I thought it might help. Please stay positive. Sending much love!

 https://www.inspire.com/groups/ovarian-cancer/discussion/annual-valentines-day-survivors-update/

oldbeauty
Posts: 191
Joined: May 2012

der Maus, I can only add my sincerest wishes that you find a way out of the pain and get some control of this tumor.  I thought I've experienced 10 out of 10 pain, moaning in the ER for someone to please help me. Morphine gave me relief and then the fentanyl patch (combined with other drugs) until the radiation shrank the beast.  I hope your team of surgeons can work with a palliation team to give you some relief for you to gather your wits and strength for what lies ahead.  I am with you on the idea of cutting out the culprit, especially since no organs are affected.  I hope your journey into pain control proceeds apace.  Best wishes and have confidence in your decision.  Oldbeauty

rcdeman
Posts: 256
Joined: Aug 2016

So sorry to hear you are in such pain, Bobbi. I can't believe the tumor is growing so quickly, so I pray that the surgical oncologist you mentioned will take your case and operate on you as soon as possible! I hate Fentanyl and its side effects, but if it's really painful, this may be the suggested way to go. Please know that I am dearly praying for you! I understand sometimes it gets so tiring and painful, that you just want to give up, but I'm praying you will stay strong.

Love,
Rebecca

hopeful56's picture
hopeful56
Posts: 73
Joined: Jul 2017

You gave me words of encouragement when I had to go for my first chemo.  I'm so sorry that you are now having to  go through this after everything you have been through.   That surgeon sounds like a real jerk.  Probably got an "F" in bedside manners.  

I hope  your new surgeon can get your scheduled  for surgery as soon as possible to help you and that you can get pain relief. 

You are in my prayers.

Sandra

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2585
Joined: Mar 2013

B, I don't think ANY of us think you are being melodramatic.  I can't imagine your pain, and I am so sorry you having to go through it.  It sounds like you find a surgeon who has an idea - thank god for that.  All my thoughts and prayers my friend.  We are here for you any time. E

pinky104
Posts: 574
Joined: Feb 2013

Again, there are similarities between our cases.  I've had sciatica since I was 34, so I can identify with how you usually feel.  A couple of years ago, I had numbness develop in the front of my thigh.  I was referred to a neurologist for testing by my PCP.  I thought I still had peripheral neuropathy, but the tests came out negative for that.  I'd had it in both feet.  I still had some numbness in one foot, but that was apparently a result of having nerves cut during bunion surgery.  The nerve studies didn't show any problems causing the thigh numbness.  The neurologist said my problem must be that I was wearing my clothes too tight.  He said a condition called paresthetica meralgia results from that.  I realized that I had tightened a belt a little more tightly recently, so I thought that was the cause.  He said it would go away in 6 months, which it didn't do. 

Eventually, I had a hemoccult test given to me by my PCP.  You may remember my story.  Blood was found in one of the 3 smears I did from my stools, which led to a colonoscopy where cancer was found (by the camera views) growing on the outside of my ascending colon.  It was also in the peritoneum and paracolic gutter, plus it was in my muscle and just about to go into my bone.  I had a CT scan and a PET scan, then surgery the following week.  My GYN/onc. and a general surgeon operated on me trying to remove as much cancer as possible, but they were not able to get it all out of the muscle because it would've left me unable to walk.  They figured chemo would take care of what was left of it, and I was NED after chemo.  However, I'm still numb and my CA-125 isn't as low as it was after my first surgery, so I'm still a little leery.  My GYN/onc hinted that he thought my UPSC would come back again in about 5 years.  I don't think mine was as bad as yours, although you now have me wondering if some of my sciatica was caused by this thing.  I was never told which nerve was the problem, but the neurologist said the nerve ran over the top of my hip, which may fit with the sciatic nerve.  I got epidural steroid shots in Dec., 2016 and Jan., 2017 which seemed to help.  My cancer came back in a big rush shortly thereafter. in two months, my CA-125 went up well over 800%.  My surgery was in early April last year.

I sympathize with how you're feeling.  Regular sciatica is bad enough without having something pressing on the nerve continuously.  I hope they can get most or all of it out with your surgery.  Keep posting so we know what's happening.  Good luck.

Harmony09's picture
Harmony09
Posts: 75
Joined: Aug 2017

Oh B! I hate to hear this from you....you have been one of the most supportive and encouraging women here. So.....you definitely shouldn't feel bad when it's you that needs to be supported. I hope you feel better really soon. I'm so sorry you're in such pain. Boy would I like to have just 5 minutes with that rotten doctor!

I think there's a lot of truth in what Takingcontrol58 was talking about. I've been reading a book with similar information entitled, Life Over Cancer by Keith L. Block M.D. It devotes a whole section to the significance of elevated levels of iron, and it describes the importance of many more things. Some people call the author "The Father of Integrative Oncology". He is not against conventional medicine, yet he believes there is more that we can do, in addition, that can make our bodies an inhospitable environment for recurrence. My doctor actually recommend the book. 

I hope your surgery goes well and the recovery is quick!  Please keep us posted.

Sincerely,

Stacey

Armywife's picture
Armywife
Posts: 294
Joined: Feb 2018

Bobbi, how are you?  I have been away too long and not sure if I missed an update since this post.  Hugs, dear girl.  Pain is no fun.

MrsBerry
Posts: 102
Joined: Dec 2017

I have been thinking of you, also. I hope you getting some relief. 

derMaus's picture
derMaus
Posts: 559
Joined: Nov 2016

Dear friends, thank you for reaching out to me. I missed all of you while I was away. This is what happened: I'd been having increasing pain from a huge, rapidly-growing pelvic tumor and was scheduled for radiaton starting June 11. I went for my first out-patient treatment but wound up being directly admitted to the hospital due to uncontrolled pain. The week after that was a blur of various drugs but I did manage to complete 4 radiations while in the hospital, courtesy of a morphine drip and staff who were kind enough to ignore my screams. To add insult to injury, my computer got a virus and locked me out the day before I was hospitalized, so I had no means of communication. Caramba! Fortunately a young cousin was able to unlock it today so I can get back into all my accounts. Mirable dictu!

I got home Saturday evening and am now doing daily radiation courtesy of fentanyl patches and continuous morphine shots. I think there must be at least some shrinkage happening, since the pain isn't as bad. On Friday I'll have my second Keytruda infusion, too, so hopefully that's doing it's part as well. The CT scan week after next will tell more. Meanwhile you are my shining stars; thank you again for reaching out. You mean the world to me. B

Armywife's picture
Armywife
Posts: 294
Joined: Feb 2018

More adventures in courage and grit.  So proud of you for getting through it and still having the energy to share the details with us!  So eager to hear what you think of Keytruda as far as side effects, and what the CT says.  Thankful we have so many options.  (PS I have a IV friend who had tumors growing after chemo and radiation, and after only 3 months of Keytruda there is NOTHING on the scan.  What hope this gives us!!)

CheeseQueen57's picture
CheeseQueen57
Posts: 804
Joined: Feb 2016

I’m glad they’re finally controlling the pain. Fingers crossed that the therapy will eradicate the source of it. Stay strong warrior!  We’ve got your back!

SF73
Posts: 264
Joined: Oct 2017

So glad to hear that your pain is being managed and that you have started the Keytruda treatment. Wishing you all the best!

oldbeauty
Posts: 191
Joined: May 2012

der Maus, Bobbi, your newsy update suggests you are getting the pain relief you should have.  I, too, benefited from morphine and fentanyl.  I am hopeful on your behalf that the CT will show the tumor is shrinking.  I forget now how much time passed between my own hospital stay for uncontrolled pain and when I started to wean off the fentanyl after radiation started but I am sure you have someone watching over your care to responsibly balance pain relief and the prospect of unhealthy dependence on the opioids.  Given the national dialog on opioid addiction and what seems to me some knee-jerk reaction of shutting down prescriptions, it is a relief to hear that palliation physicians did what was responsible and necessary, i.e., use effective doses of opioids, to relieve your pain.  Cancer patients' needs should be respected.  Enough editorializing!.  Continue to heal and recover your strength and mental stamina to move on to the next step in extending your years among us.  You are a vital contributor here and in your community, I am sure.  Best wishes, Oldbeauty

Harmony09's picture
Harmony09
Posts: 75
Joined: Aug 2017

I just wanted to let you know that I'm thinking of you and praying for you. I hope your pain remains controlled, and I am excited to hear positive results from the Keytruda and radiation. I'm in awe of your strength and Warrior Spirit! I really needed to be inspired today, so I thank you.

Sincerely,

Stacey

ConnieSW's picture
ConnieSW
Posts: 1442
Joined: Jun 2012

I so much admire you and so many other strong women I've met on this site. Keep your courage up.  Thank goodness for morphine and fentanyl and keytruda. 

Jairoldi's picture
Jairoldi
Posts: 206
Joined: May 2017

I too am glad to hear that your pain may now be under control or at least tolerable. Old Beauty said it all so well.  May the upcoming weeks bring more relief and good results.

Best,

Jayne

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2585
Joined: Mar 2013

B, I am sending you virtual hugs.  Love, E

MAbound
Posts: 863
Joined: Jun 2016

If anyone here is a shining star here, it's you! I can't believe how much you've been enduring and sure hope that you are finally going to get the beast tamed, but boy oh boy what you are having to endure to get there! Thanks for the update, we've been so worried about you! 

LisaPizza's picture
LisaPizza
Posts: 214
Joined: Feb 2018

So glad they aggressively managed your pain. I am sure radiation  is decimating that [Content removed by CSN Support Team.] tumor.

Cass83's picture
Cass83
Posts: 151
Joined: Feb 2017

I am adding my thoughts and prayers to all the ladies here for you!

Wannabeatit
Posts: 97
Joined: Dec 2017

One day at a time.  Cam’t believe how much you have been through Warrior Lady!

 

EZLiving66's picture
EZLiving66
Posts: 1345
Joined: Oct 2015

How did the Keytruda go today?  Is the pain subsiding anymore??  You have been through hell and back with this, Bobbi, and I wish there was something I could do to help.

Ibi sed eamus ad gratiam dei I.

Love,

Eldri

Abbycat2's picture
Abbycat2
Posts: 644
Joined: Feb 2014

I am glad to hear that your pain is subsiding and that you are feeling a bit better. The Keytruda and radiation treatment seems to be working well for you. Will you be receiving the IORT? 

Wishing you only best outcome,

Cathy 

 

MugsBugs
Posts: 106
Joined: Jan 2018

I am glad you are getting some relief from the pain.  I hope you are soon pain and cancer-free.  I am hoping that Keytruda works!  Try to keep your spirits up.  

Hummingbird6
Posts: 12
Joined: Aug 2017

Thanks very much for posting this, it was painful for us to read (out of caring for you). I’m glad you got admitted and the pain control is better.  Pain can sap energy, stress us out, and is not a good idea to try to ignore. There are options, even treatments for nerve pain.  Cancer pain management programs have many tools. Glad you let others know pain control is Improving, and that’s it’s a good idea to tell your treatment team about it and try the recommended treatments!

Donna Faye's picture
Donna Faye
Posts: 242
Joined: Jan 2017

And seems with good reason but so glad they moved swiftly on the pain and the radiation. You have been in my thoughts daily as I would check in and look for your post. Sounds like they have devised a routine that is better and giving you some relief. I had a friend tell me "Don't be such a hard A ... tell them loudly that you are hurting and keep telling them." My wishes are for the shrinkage to be great and your pain to be less. All of us are pulling for you. xoxo DF

Northwoodsgirl
Posts: 529
Joined: Oct 2009

I am so glad you were able to post your update. You certainly have been through some unbelievable days of suffering. Thank goodness for  opioids! My prayers are with you...((Hug)). 

Lori

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