Pam's Scan Results and What Follows

DanNH
DanNH Member Posts: 184 Member

It was very unusual not to hear promptly from the Oncologist about Pam's CT scan. He has always been on top of these things. The report was finally posted on MyChart on Friday last. The report found small lesions in the lungs that have remained stable in size and number. The Liver mets continued to shrink and some thickening in the colon within the rectosigmid region. We had hoped that the lung mets would be gone and were disappointed about that. We were happy that the liver mets continued to shrink. The treatments are working.

We did labs on Saturday and the results began popping up on MyChart. Blood work looks good. CEA came up on Sunday and had creeped up from 81.7 a month ago to 98.3. This was upsetting. It had been on a steady decline since the first reading of 1298 in February. Pam dreaded doing any more chemo. I told her that she should prepare for chemo on Monday as it was likely.

We put together a list of questions for the oncologist visit Monday morning. I had questions about what other treatments may be available, ie. surgery, radio frequency ablation, radiation, etc. Our oncologist has never spoken of any of these options other than to say surgery is not an option. His reports have always stated that care is palliative.

We prepared for the worst and met with the Doc. He wasn't aware that the scan had been completed. It turns out that he NP had ordered the scan and it was not in his feed. He apologized for us not being notified and urged us to call his office if such a thing happened in the future. Again, he is always on top of these things and informs us promptly.

Paraphrasing and in summary, he said that the lung mets may be remaing scar tissue or dead cancer from the treatments. He is going to order a PET scan. Maybe the insurance won't reject this request like they did the last one.

He was happy with the liver mets continuing to shrink. He brought up radio frequency ablation, HAI Hepatic Artery Infusion, and SIRT Selective Internal Radiation Therapy to address the liver mets. He will be in contact with the specialists to see what they have to say about treatments for Pam.

I brought up a surgical resection of the colon to remove the primary tumor. He said that the colon was thickening but functional, no blockages. He said that removing the tumor doesn't change the outcome. Although I think I know what he means, he has never told us what the expected outcome is. We did learn that from our second opinion in March; mean survival for stage 4 colon cancer is 30 months. Pam really doesn't want to do surgery at this point. She feels so awful so often.

We discussed metronomic chemo and didn't get to far because of all of these other options being on the table and the lead time to setting them up. Then it was off to infusion 13; Folfir with Avastin and 5FU. He said that it was getting to the point that she needed a break from chemo.

Pam started feeling poorly with the avastin and slept through a lot of the infusions. After the infusion was finished she got up to use the bathroom. She was a little swimmy in the head and her knees were weak. We noticed that sometimes her knees don't work properly during the three day infusion period; they won't lock but almost hyperextend when she walks. It is usually the right leg but this time it was both. She has a knee brace that she uses during infusion to support the knee but we forgot to bring it - she was feeling good going to the infusion. I had to help her during the walk.

After pump connection she went to stand up and got pretty dizzy. I asked the  infusion nurse to check her pulse02. We left one time with her at 91 and I didn't want that to happen again. The nurse decided to do all the vitals and they all looked good other than BP systolic higher than normal at 158.

The Oncologist arrived quickly and checked her out. I can't praise him enough. He is the only one in the practice that I see regularly checking up on his infusion patients in the infusion center. He asked her if she had eaten anything and again mentioned getting a break from the chemo.

They had her lay back for a while and brought her some chicken soup and gingerale to give her blood sugar a boost. It was all off diet for her but under the circumstances I encouraged her to eat and drink it all. About a half hour later the dizziness was mostly gone and I took her to the car in a wheel chair.

She walked in strong carrying her cane and had to get a ride out... But without the chemo...

Once home she walked around, OK for chemo day. She slept a few hours, spent some time on the Ereada mat, had a little supplemental oxygen, and felt a little better. She did not have much in the way of sick stomach although swallowing was uncomfortable, as it usually is.

I sent the labs, CT Scan report, and a summary of the visit to the ND and Integrative Oncologist. We have a visit with one of her PCPs, Vitamin C IV and hyperbaric 02, and energy healing on Thursday and Friday.

At this point we are awaiting to learn what lays ahead for us. The rest of the year is an unknown for now. I will post about what treatments are offered.

I have a question about surgery. Our oncologist said that it won't change the outcome. I don't understand how not removing the tumorous colon won't be beneficial to the body, lower the tumor load, and let the immune system attack a smaller force rather than fight a general multifront war.  I would be grateful to hear from others who have been through this.

My other concern is about whether or not a colostmy would be permanent or temporary. I have read enough to know that either way it is a lifestyle change. I don't think I will be satisfied until I have a surgical oncologist review the case and get an opinion. Pam has already had at least five non-cancer related surgeries already and is not warmed up to the idea.

Dan

 

Comments

  • myAZmountain
    myAZmountain Member Posts: 417 Member
    edited September 2021 #2
    Surgery

    I honestly don't understand why they do not want to do surgery other than Oncologists only know how to pump Chemo into you no matter what. I would make an appointment with a surgeon that is competent in cancer related Colon surgeries and stop the chemo. I had a hemicolectomy where they removed the ascending colon, appendix , peritoneal tumor and resection all laparoscopically, recovery was not bad and i was out of hospital in less than 3 days.  

  • SnapDragon2
    SnapDragon2 Member Posts: 683 Member
    I know of one person who had

    I know of one person who had lymph node involvement, lung and liver.  High CEA.  Onc kept saying NO surgery, won't make outcome any better.  Onc's know chemo, never take their advice on surgery.  The person who had the colon primary removed and some lymphnodes at the same time had their CEA drop to the teens and is now working on the lung and liver.  They still have some lymphnodes and working on them too.  So, point is 2nd, 3rd, 4th surgical opinions can lead to better outcomes.  

  • Trubrit
    Trubrit Member Posts: 5,671 Member
    edited September 2021 #4
    I honestly don't know what to say

    I had a friend whose Oncologist told him no to surgery on his primary tumour in the colon. I asked him why, and he said they wanted to focus on the liver and lung mets, as they were the most dangerous. Meanwhile, the tumour in the colon grew and he was in such pain and discomfort.  I just couldn't understand why they wouldn't go for the tumour removal.

    I know that surgery puts chemo off by several weeks, and that could be devestating if tumours are growing fast. 

     I wish your wife the best. 

    Tru

  • Real Tar Heel
    Real Tar Heel Member Posts: 307 Member
    edited September 2021 #5
    Not sure how they handle

    Not sure how they handle treatment recommendations where you are. I think most places have a tumour board that looks at the patients' situations as a group and debates about what to do. Could it be that the word you are receiving is from the board, or is it just this one doctor?

    I don't have experience with the same  organ spread but I am also considering talking to another institution regarding surgical options.

  • Tueffel
    Tueffel Member Posts: 323 Member
    I can understand

    I can understand the opinion from your oncologist. There are simply many things to consider when on chemo and if you are not. First thing would be that you need to be off chemotherapy for 6 weeks. Chemotherapy impairs wound healing, the avastin prevents the formation of new vessels, necessary to close wounds. When my dad had his emergency surgery on chemo, the doctors were really afraid of bleeding and the wound not healing...

    So, to make surgery possible, your wife has to be off chemo for 6 weeks. Then it depends on the tumor, its location if they do it laparoscopically or open. If it is open, 1 week hospital. My dad after his colon surgery was again 4 weeks off chemo, then they started again but could not use the avastin because the wounds were not closed. You need to expect at least 10 weeks off chemo until you can have chemo again. I think our oncologist told us that after 8 weeks Folfox is washed out of the body, no effect anymore. During this time, the tumors of your wife might grow again (unless the PET show the cells are dead). And no one will know how the response will be.

    Your wife gets regular CTs and this way the colon will be monitored as well. The main problem for your wife is not the tumor in the colon, it is the metastasis. The colon tumor is basically adjusted to the environment there, the mets are again mutated so they could live outside the colon, everywhere in the body. They are the most dangerous, they give the oncologist headaches, and drop the prognosis. So, I think attacking them is more important or if you can, attack them, primary tumor and met, at the same time. 

    I think the only benefit from the surgery might be the drop of the CEA and reduce tumor load, meaning more focus on the metastasis. HAI pump placement is an open surgery as far as I know, so you can combine them together. Attacking both at the same time. But just a surgery for removing the colon and primary tumor? The way I read your text, I think Pam needs time to charge her batteries and a surgery will drain her too. I dont know what your doctors will say, they can have a different opinion. I just wanted to state my thoughts and worries here. 

     

    How is it with eating? Is she eating enough? You write a lot about nausea... If you can maybe give her additional calories and food through the port. Parenteral nutrition. It is not keto but I think Pam might benefit from it if she can not eat.

    Take care and good luck!

  • Trubrit
    Trubrit Member Posts: 5,671 Member
    edited September 2021 #7
    The colon tumor is basically

    The colon tumor is basically adjusted to the environment there, the mets are again mutated so they could live outside the colon, everywhere in the body. They are the most dangerous, they give the oncologist headaches, and drop the prognosis. So, I think attacking them is more important or if you can, attack them, primary tumor and met, at the same time. 

    Thank you for that explanation,Tueffel. It really helps me understand why my friend's Oncologist focused on his liver & lung mets. I could never understand why.  He has passed now, so nothing helped him, in the end. 

    Tru

  • Tueffel
    Tueffel Member Posts: 323 Member
    edited September 2021 #8
    Trubrit said:

    The colon tumor is basically

    The colon tumor is basically adjusted to the environment there, the mets are again mutated so they could live outside the colon, everywhere in the body. They are the most dangerous, they give the oncologist headaches, and drop the prognosis. So, I think attacking them is more important or if you can, attack them, primary tumor and met, at the same time. 

    Thank you for that explanation,Tueffel. It really helps me understand why my friend's Oncologist focused on his liver & lung mets. I could never understand why.  He has passed now, so nothing helped him, in the end. 

    Tru

    Sorry to read about your friend

    Sorry to read about your friend. Cancer is s**t. I just stated what I think and read through the forum and medically wise. They even stated once that primary tumor and metastasis are 2 cancers. Right now just based on what we are going through with my dad, I agree. The mets now act completely different than the primary tumor or even the mets last year. 

    Still, I think your friends oncologist should have monitored the colon more closely to prevent blockage, perforation or even see and upcoming resistance. 

  • Tueffel
    Tueffel Member Posts: 323 Member
    Forget 2 things

    In my last post I forgot 2 things.

    If you can try to get a tissue sample of the metastasis or even do liquid testing for Foundation One. You never mentioned if she is RAS, BRAF or MSI mutated. Maybe another antibody is more effective than avastin.

    Second: Methadon. I hope you will find some English research on it. In mice models it can increase effectiveness of chemo, needing less chemo, and prevent resistance from developing. I read many patients reports who topped their prognosis and we are talking from 1 year to 7 years. They will start trials some day in Germany because the money is finally here. If you find an English source, discuss it. 

    Good luck!

  • DanNH
    DanNH Member Posts: 184 Member
    edited October 2021 #10
    Infusion 14 today

    It's been a while since I posted. We are at infusion 14 today. The last one was September 20th. The oncologist thought Pam should take a break from chemo and started the process of setting up Y-90 radioablation. That was to make use of the break time. At the end of the second week we had no call so we called radiology. They said they would call us. There is still no appointment and the oncologist is none to happy. The only thing we know is that the oncologist spoke with the radiologist who said that the tumor is located in such a way, away from a vein, so that he can do the procedur.  So we are supposed to get a call this week. In the mean time folfi infusion is under way as are the side effects. 

    We are in the process of bringing another integrative oncologist on board to see if we can replace this maximum tolerable dose of Folfiri with low dose metronomic chemo. I hope to get this in place before we have to do an infusion 15.

    An update. Pam was feeling pretty badly following Folfiri and I expected to have to wheel her out.  Our infusion nurse was a seasoned nurse and after speaking with Pam about how she was feeling she thought Pam needed a half a liter of fluids.  She never got fluids like that following infusion before. Pam got her fluids, felt much improve, and walked out with her cane. So it made me wonder why no one else ever offered her fluids following infusion before.  It was that much of a difference! 

    The moral of the story is don't hesitate to ask for fluids. She gets them following every pump disconnect now. We are so grateful for those experien infusion nurses who really know how to take care of their patients!

    During infusion the radiologist called and we have a consult tomorrow. While walking out to the car the integrative oncologist office called and we have a Zoom appointment in November. 

    Dan

  • DanNH
    DanNH Member Posts: 184 Member
    edited November 2021 #11
    Y-90 Mapping and Infusion 15

    The last infusion was October 18th. We went for infusion 15 last week. Her CEA had almost doubled. The Oncologist thought that the treatments might no longer be working. He ordered a CT scan which we were able to get done that afternoon due to a cancellation. The report said that a few liver mets had grown slighty. No other growths. I wonder if the growth was due to only one treatment in eight weeks... As it turns out she will stay on Folfiri. No imuneotherapy as the KRAS mutation is present. Mapping is this week. Infusion 15 on Monday. Anexiety is constant.

    We had a very encouraging zoom visit with an integrative oncologist who put us at ease about the Y-90 treatments. We have another new patient appointment with a doc at Dana Farber. We hope to discuss and set up a metronomic chemo treatment for Pam, one that her integrative treatments will compliment.

    We found another integrative in our area. How I missed him in March when this journey began is a mystery to me. He is Dr. James Belanger at Lexington Natural Health Center in Lexington, MA. We have a new patient appointment with him as well. He did a series of radio shows on cancer for NPR in 2017. I started listening to them, the one on Colon Cancer and then the ones on natrual supplements. WOW! It was very informative! https://www.youtube.com/watch?v=MtroBecqxko&list=PL60-4XeA_efVRHdkX7iFg8YqLD9gY3x1X&index=12

    It has been a very anxious few weeks. You all know what I mean.

    Dan

  • DanNH
    DanNH Member Posts: 184 Member

    Infusion 15 was a week ago Monday. Pump disconnect was Wednesday and we had a very quiet Thanksgiving holiday. Side effects were minimal following several weeks of recovery time.

    We had a great appointment at Dana Farber. We can see why it is a world class cancer center. It was good to be able to speak candidly with the oncologist about integrative oncology options. We will likely be changing oncologist following Y-90. We really love our current oncologist and this is not a decision that we take lightly. He is a very competent and caring doctor. We have been blessed to have him treat Pam thus far.

    Pam got a referral to a cutaneous oncologist (dermatologist) at Dana Farber to address side effects from Folfiri. He prescribed a steroidal cream and recommended several readily available, over the counter moisturizers.

    I am reading Jane McLelland's book "How to Starve Cancer". It is her personal story about beating several cancers and the science behind what she did that was outside of the standard of care, to succeed.

    We met with Dr. James Belanger at Lexington Natural Health in Lexington, MA and after consultation, chose to have extensive blood work done. Blood samples sent to multiple labs to determine what therapeutic agents (https://www.rgcc-group.com/) , chemo, repurposed meds, and natural, will kill Pam's cancer. Other testing will check how well her immunity works against cancer and what the cancer is doing to beat immunity. We should have results by mid December.

    Y-90 delivery to right side of liver was today (Friday December 3rd). Left side should take place in 4-6 weeks.

    There has been so much going on and so many moving parts over the past two months. It has been emotionally challenging between despair and hope. God bless all of you cancer fighters and care givers.

    Dan

  • Trubrit
    Trubrit Member Posts: 5,671 Member

    Thank you for your update on Pam.

    You are both very thorough and that will work to her benefit.

    I hope she bounces right back from yesterdays Y-90 procedure, and that it works its magic.

    Tru

  • SnapDragon2
    SnapDragon2 Member Posts: 683 Member

    IMO, the testing is important as studies reveal known pathways, immune function, mutations, chemo side effects and efficacy, ect. I think Pam is in the right lane for personalized treatment.

    I hope she glides thru with more improvement with Y-90.

  • DanNH
    DanNH Member Posts: 184 Member

    Most people have some minor discomfort, nausea, and weakness with Y-90. A few people really suffer with post-embolization syndrome. Pam was one of the few. She had the expected pain from the procedure, at the point where they entered the femoral artery, and other muscle pain similar to mapping. She had the expected nausea, general weakness, body aches, and flu like symptoms.

    She also had some pretty intense pain in her liver from the beads blocking blood and oxygen from reaching the tumors. The pain was in her right liver (where treated) and came in waves that lasted 30 minutes or more at a time. The pain made her nauseous. She toughed it out for a few days and when it didn't let up she finally got a round of steroids to help with inflammation of the liver and used some of the pain meds left over from her port. That helped. She has a high pain tolerance! Higher than mine!

    We used ice packs over the painful area and topical CBD oil (lotion) took a lot out of the pain. That is definitely worth trying. We got it at Whole Foods. It is called ShiKai CBD Everyday Formula, unscented body lotion. It comes in a small tube or a 6 ounce bottle and is on sale this week. I am sure that there are other good ones out there as well.

    She was really weak for a week and was not able to get into the hyperbolic oxygen chamber. I had to wheel chair her in and out of the appointment. She was easily winded after walking a short distance and supplemental oxygen helped a lot.

    Her appetite was poor for several days but did improve as time went on. She lost about four pounds. Today, nine days out, she is much stronger and walking a bit without her cane. She felt strong enough to make dinner tonight. She has to pace herself because her energy runs out like an hourglass does; the last grains of sand drop and she is out of energy. It doesn't just taper off.

    Flu like symptoms are due to the body ridding itself of the dead tumor debris. I had remembered reading about how tumors recycle that debris to build more tumors. There is research that found that resolvins work to eliminate this debris from the body. We got a supplement from one of the integrative docs. It is called "SPM". It contains three Hydroxyeicosapentaenoic acids: 18-HEPE, 17-HDHA, and 14-HDHA. There is some interesting literature if you search the terms.

    It looks like they will break the left liver up into two sessions. She has to look forward to this two more times. We will have labs at the end of this upcoming week and another procedure 4-6 weeks from the first.

    It was quite a difficult and wearing week last week.

    Dan

  • SnapDragon2
    SnapDragon2 Member Posts: 683 Member

    She is tough! Hang in there. Now you know how to handle pain and other not so pleasantries when she goes after the other liver tumors.

    Praying for a successful quick recovery.

    I am looking into Resolvin. Thanks for mentioning it.

  • BerniceOB
    BerniceOB Member Posts: 36 Member

    We continue to think and pray for you and Pam. You are both so strong. Thank you for the continued updates! I know that it is probably not always easy to do but I think that you are making a difference in others lives by sharing the knowledge that you have gained over the past year. Thanks to Pam as well for letting you share her story.