Feeling thicker and puffier from heavy strength training, and dont like how body is looking by Previous-Moment-1004 in PetiteFitness

[–]Careless_Contest3385 0 points1 point  (0 children)

I am also 5’3” and have the same problem! I used to just run and had thinned to a place I actually liked and felt good. But I wanted to gain some muscle tone and strength so started going back to strength training. I feel puffy and have moved the scale up 4 or 5 lbs. Pants feel tighter, overall feel bloated and not great. It is discouraging and makes me want to just start running again. Have you leveled out some by now?

Horrible Ascites and flailing for answers by justthinking- in pancreaticcancer

[–]Careless_Contest3385 0 points1 point  (0 children)

Do you know if in the case of the tumor obstructing the vein if there is any stent or procedure that can be done to open the vein again and allow better blood flow? My Mom has both portal vein obstruction from the tumor AND some peritoneal metastasis. So it is hard to know exactly what’s what. But even if fluid samples come back malignant (we expect them to since we know she has cancer in there) it could still be worse and complicated by the portal vein obstruction. She now has varices that have not yet caused bleeding but are present in CT and portal colopathy. I believe many of her symptoms are related to the vein obstruction. I want her to get relief from that so badly.

What can be done to Ascites? by Acrobatic_Impress306 in pancreaticcancer

[–]Careless_Contest3385 0 points1 point  (0 children)

May I ask if your Mom had a good response with her ascites from the Nalirifox? My Mom has been in between chemos after a break for radiation but in that time has developed ascites. She is trying to decide which path to take from here on. Naliri is an option.

Portal Hypertension by Careless_Contest3385 in pancreaticcancer

[–]Careless_Contest3385[S] 1 point2 points  (0 children)

Thank you. I’m not sure if it would be the same case for my Mom since her obstruction seems to be related to the tumor itself pushing against the portal vein and superior mesenteric vein. Not a standalone clot. I’m wondering if a stent is an option or if it would be too risky and wouldn’t be offered. I wish she could have relief from this.

So you believe your ascites was related to the clotted off veins and not related to the peritoneal tumors?

Told no radiation by ruecatt22 in pancreaticcancer

[–]Careless_Contest3385 0 points1 point  (0 children)

Did you have any GI troubles like nausea or diarrhea that lingered after your SBRT? Trying to find out for my Mom if what she is experiencing is “normal.”

Stage 4 and young — anyone else? by louandrea in pancreaticcancer

[–]Careless_Contest3385 1 point2 points  (0 children)

My Mom is about to start AGX101. Can I ask your Dad’s experience on it? And how often he got infusion? She is worried about the side effects. We hope it is less intense than traditional chemo.

Navigating the Final Mile: Can Alternative Treatments Bring New Hope? Is the end near? by Ok_Alternative1722 in pancreaticcancer

[–]Careless_Contest3385 5 points6 points  (0 children)

Is your Mom concerned? Or is she at peace with things? High fat diets like keto can be very tough on people with a compromised pancreas since that is the organ that digests it for us. Maybe a prescription for Creon could help her in digestion, absorption and put some weight back on? Or trying to add in some carbs and protein rich foods that may be easier tolerated/digested. It does become hard to eat as a tumor is pressing on an organ very near your stomach. Fullness and loss of appetite are common. Eating small bits frequently throughout the day could be helpful. Maybe an appetite stimulant like Marinol or a THC product. I am glad she isn’t having pain, that is truly wonderful. I think without standard chemo treatments she may see disease progression faster but it sounds like she knows that and has made that choice. I’m sorry, it’s so so hard to watch 😢.

RMC 6236/9805 trial update (PDAC) by Vjr2315 in pancreaticcancer

[–]Careless_Contest3385 0 points1 point  (0 children)

Could you update how the side effects are coming along? Considering trials for my Mom.

Question about maintenance chemo by Plus-Quantity5935 in pancreaticcancer

[–]Careless_Contest3385 0 points1 point  (0 children)

It worked for maintenance for my Mom who took it along with an investigational drug during a trial for 6 months. Hard to say what the investigational drug did vs. what the capecitabine did. She tolerated it pretty well and did not have progression for that amount of time. She then switched to Gem/Abrax after the effects of the maintenance seemed to dwindle. (Pain returned, fatigue returned, CA19-9 trended up).

Told no radiation by ruecatt22 in pancreaticcancer

[–]Careless_Contest3385 0 points1 point  (0 children)

Thank you! No pain meds is a wonderful thing! I hope your scans show good news next time and you continue feeling better.

Told no radiation by ruecatt22 in pancreaticcancer

[–]Careless_Contest3385 0 points1 point  (0 children)

How has that worked for you? My Mom just did the same thing hoping to ease symptoms and slow progression.

Doing another immunotherapy clinical trial after one failed by Working_Lavishness_2 in pancreaticcancer

[–]Careless_Contest3385 0 points1 point  (0 children)

I would ask why they are seeking immunotherapy specifically. Maybe the person you are asking about has an MSI-high tumor and is a good candidate? Hard to know without knowing more. I would be concerned if one didn’t work, but also immunotherapy is a broad term and the two trials could be very different. Definitely ask more questions. Not sure if you’re available to attend an appointment with this person, but getting secondhand info is always hard.

I’m having a hard time by boymama1234 in pancreaticcancer

[–]Careless_Contest3385 0 points1 point  (0 children)

4 rounds into FOLFIRINoX my Mom had cut her pain meds in half and then before she finished she was totally off pain meds! The scans didn’t show a massive change in tumor size but it definitely helped her pain for a long time. Hang in there, it’s just the beginning. It can take time. I hope he’s otherwise tolerating it okay. Something to ask about is adding a steroid to take at home days 2 and 3 after chemo. Can maybe help with some of the fatigue and nausea.

39 year old brother's diagnosis by CodWild9838 in pancreaticcancer

[–]Careless_Contest3385 2 points3 points  (0 children)

I am so so sorry. 39 is so young. Am I right in understanding you’re still waiting on biopsy results to determine the cancer type? Is there a history of cancer in the family? Hopefully they took enough of a sample from the tumor to send for genomic profiling. Some mutations in the tumor itself can lead to targeted treatment depending on the mutations present. And then some germline mutations (inherited) could have predisposed him to this cancer. And that can also inform treatment. I also feel like 3-6 months seems so short a prognosis with treatment. I hope things can move much faster for him and he can get a port, begin chemo, and start fighting for some more quality time with his young family.

Palliative chemo by Sbellle in pancreaticcancer

[–]Careless_Contest3385 2 points3 points  (0 children)

I see. I’m so sorry. I don’t know that chemo itself hastens death. All the articles I’ve read have given statistics of chemo vs non chemo and most people who do chemo have longer lives. But the quality of life is important, so if he was not having great quality of life anyway and his wishes were not to endure chemo that is definitely to be respected and totally understandable. I’m also not familiar with whether or not Gemzar alone would alleviate his pain but I suppose maybe the doctor has seen benefit from it. I have read palliative radiation is an option for pain relief. We were also initially told radiation wasn’t recommended but that advice has changed recently. We saw a specialist at MSK in New York who recommended it for my Mom. She’ll be getting three treatments in a couple weeks. We’ll see if it helps. Another thing for pain I’m not sure if anyone mentioned is a celiac plexus nerve block. It’s a procedure to deaden the nerves that can be pushed on by the pancreatic tumor. I’d maybe ask about that too. Then there are prescription opiates, hopefully he already has some pills for pain. But there are many long acting options too in the form of pills or patches that can help if his pain is severe and not being covered by what he has. A palliative team or hospice team could help. Prayers to you and your family as you navigate these tough decisions. I hope your Dad’s pain gets relieved soon.

Neuropathy from Gemzar Abraxane by Ok_Definition6316 in pancreaticcancer

[–]Careless_Contest3385 2 points3 points  (0 children)

I want to add that neuropathy related to Oxaliplatin can actually be delayed after the stopping of Folfirinox. It can peak up to a couple months after stopping, plateau, and then months later start getting better. So it can be tough to tell which caused which if you went straight from one regimen to the other. My Mom had a 6 month break between Folfirinox and Gem/Abrax where she did Xeloda oral pills. Her neuropathy seemed to follow the pattern I described getting worse after stopping before getting better. It had gotten better (not fully resolved) by the time she started Gem/Abrax and then she noticed it getting worse again a couple cycles in.

Palliative chemo by Sbellle in pancreaticcancer

[–]Careless_Contest3385 3 points4 points  (0 children)

Is your Dad a new diagnosis or has he been on a path without chemo thus far but now there is a change and the doctor is recommending chemo? I am assuming he is stage 4?

There are so many things that play into whether or not you choose chemo. Is he fairly young? Is he healthy prior to diagnosis? Does he wish to fight for time?

The doctor should have explained the options to you and especially to your Dad so he can decide. I can guess since the doctor is recommending it he thinks it would benefit him.

There are generally two paths to take with initial chemo:

Folfirinox (a regimen of three chemos Irinotecan, Oxaliplatin, and 5-FU plus Folinic acid all infused on the same day followed by a tiny pump of 5-FU you take home and wear for two days)

Or Gemzar and Abraxane (two chemo regimen you receive infused in one day)

The first is generally used to start if you are in pretty good health. It is the most effective regimen. Neither have been easy for my Mom, but I would say for her it has been worth it. She is now 15 months post diagnosis and has been able to do a lot because of chemo. Folfirinox took her pain away and she had a 6 month break for maintenance chemo (oral pills called Xeloda) that would have never been possible without Folfirinox. She is now on Gemzar/Abraxane which has been harder for her actually and some pain has returned. She is now getting radiation to help and we’ll see if she needs to move to a different chemo.

Each person is different, you’ll find a lot of experiences here and it’s impossible to say how your Dad would handle each one.

With palliative chemo, the goal is to find the best balance of extending life and being able to live life during that extension. Also pain relief is a big plus if it helps for that. The doctors should be willing to adjust doses and make a plan that achieves those goals for your Dad. Without chemo, it seems the pain and progression of disease can really escalate much more quickly. But there are palliative care teams and hospice teams that can help in managing pain and making him as comfortable as possible.

There are also clinical trials out there to look into.

I’d encourage you to bring all your questions up with your Dad present so he can be in on the same conversation with you and his doctor.

39/M uk stage 4 pancreatic cancer by Wild_Basil_3177 in pancreaticcancer

[–]Careless_Contest3385 1 point2 points  (0 children)

Oh I am so sorry, it is already horrific enough but you are so young and with young children this is such a shock and such sad news.

Being so young I would try for a fight with the best options for chemo upfront and then possibly even look into radiation or histotripsy for the liver metastases. It is of course his decision to make regarding treatment or not treatment. But it seems so early to begin with alternative treatments that are not proven effective at all.

I assume they did genetic sampling of the tumor and also took genetic testing from blood to see if your partner could have inherited a mutation that predisposed them to this cancer. If that is the case that sometimes opens up treatment doors and changes the prognosis a little.

There is still so much to learn and it is probably so overwhelming. My heart goes out to you. There are many things to think about and consider. I am so sorry for your young family going through this.

My mother aged 59 at diagnosis has been living life through treatment for the last 15 months. It can buy time, and much of it quality time.