MPIP: Melanoma Patients Information Page

The MPIP is the oldest and largest community of people affected by melanoma hosted through the Melanoma Research Foundation. It is designed to provide support and information to caregivers, patients, family and friends. Once you have been touched by melanoma—either as a patient or as a family member or friend of a patient—you become part of a community. It is not a community anyone joins willingly. But if you must be part of this group, you will find no better place to find the tools you need in your journey with this cancer, and the friends who can make that journey more bearable.

The information on the bulletin board is open and accessible to everyone. To add a new topic or to post a reply, you must be a registered user. Please note that you will be able to post both topics and replies anonymously even though you are logged in. All posts must abide by MRF posting policies.

Expand/ Collapse Topic
 
Replies By
View Topic
Nadia's picture
Replies 4
Last reply 12/16/2014 - 12:00pm
Replies by: Nadia, Patina, Bubbles, BrianP

My husband is on Keytruda, he already had 7 infusions, and we are two weeks away from the second CTscan and so far, so good, he had 20% to 50% tumour shrinkage.  He had several side effects, the most common ones being fatigue, sore joints, itchy skin, rashes, and we were able to keep all of then under control without going to the hospital, with only otc drugs.  But 2 days ago he started to develop some sores on his tongue, they are very painful, no bleeding yet, and they look like raw meat. 

I was wondering if anybody else on Keytruda experienced this, and how did you manage it?  Is there any type of treatment, like a mouth rinse or ointment that we can get from a drug store to make the sores go away, or at least to make the pain manageable.

Thank you!

Login or register to post replies.

lsmith - MRF's picture
Replies 4
Last reply 12/16/2014 - 9:15am
Replies by: lsmith - MRF, Anonymous, Julie in SoCal

Hi all,

The holiday season can be a hard and stressful time, especially for those who are battling melanoma (or have a friend, family member or loved one battling). Each year we receive calls from patients, survivors and caregivers asking for tips for coping with the holidays. To answer those questions and more, we're hosting a Twitter chat about "Coping With The Holidays" on Monday, December 15 at 2pm ET with special guest, licensed oncology social worker  Dr. Sage Bolte from Life With Cancer. Dr. Bolte will be on hand to answer questions like "How do I manage feelings of resentment or frustration", "How do I tell young family members why I dont feel well?", "How do I cope with the feeling of 'death' during a time that is supposed to be joyous?", "How do I honor a loved one's memory while still enjoying the holiday?" and more. 

We want to hear from you - what other questions do you think should be addressed? What questions come to your mind that you think would be hlepful for others? Please let us know in the comments below or email me at lsmithdyer@melanoma.org. Thank you for your suggestions and we hope you join us in the chat on the 15th.

Here is a link for more information about joining the chat: http://www.melanoma.org/get-involved/calendar-of-events/twitter-chat-cop...  

Lauren - MRF

 

 

Login or register to post replies.

Anonymous's picture
Anonymous
Replies 1
Last reply 12/16/2014 - 8:36am
Replies by: _Paul_

Been experiencing pretty noticable brain fog lately. Short term memory, forgetting things, etc.

Will be seeing Dr. tomorrow and ask for brain scan, but I wonder if it might be the Ipi.

Login or register to post replies.

sofiaeli's picture
Replies 4
Last reply 12/15/2014 - 10:40pm

Hi everyone.

My husband is currently fighting stage IV melanoma and is about to enter the TIL study at NIH.  Anyone have any experience with it? 

Thanks!

Melissa

Login or register to post replies.

Ashley's picture
Replies 2
Last reply 12/15/2014 - 9:46pm
Replies by: BrianP, arthurjedi007

I know I've asked a similar question before but my dad just had his scans and we get results on Monday...

He had a great response from the first set of scans after starting a PD-1 and targeted therapy trial.  His LDH levels were very high at the beginning of melanoma diagnosis and begining of PD-1 trial, and they have continued to drop.  This has been a good sign so far for us, but just wondering...

Has anyone been on PD-1 and had it work at first and then stop working?

Login or register to post replies.

The December twitter chat transcript featuring a Q&A with licensed oncology social workers, Dr. Sage Bolte and Drucilla Brethwaite of Life with Cancer, is now on our website! 

Check it out!

Login or register to post replies.

Don't forget to join us TODAY, December 15 at 2:00 pm ET for a Twitter chat about handling the stress, sadness and other emotions that often accompany the holiday season for those in the melanoma community. Special guest, award-winning author and licensed oncology social worker Sage Bolte, PhD, MSW, LCSW, OSW-C, will answer questions and provide tips for coping with the holidays. Dr. Bolte is the Director of Life With Cancer, a part of Inova Health System, established to support and provide people diagnosed with cancer with resources to help them understand and cope with their emotions. Dr. Bolte will be joined by Drucilla Brethwaite, MSW, LCSW, OSW-C, who is also an Oncology Counselor with Life with Cancer. 
 
Dr. Bolte is a licensed clinical social worker who specializes in how cancer and its treatments affect people and their relationships, including the psychosocial impact. 
 
Find the MRF on Twitter at @CureMelanoma, Dr. Bolte on Twitter at @LifewithCancer and on December 15, follow #MRFChat.
 

Instructions:

Remember, you don't have to be a Twitter user to follow the conversation! Simply go to Twitter at 2pm ET and search for #MRFChat. If you refresh your screen every minute or two, you'll be able to see the conversation. The chat transcript will also be posted on the MRF website after it concludes.

Login or register to post replies.

Marianne quinn's picture
Replies 1
Last reply 12/15/2014 - 11:44am
Replies by: arthurjedi007

My husband was diagnosed with stage 3C melanoma under his thumbnail in Sepetember 2013.. After a partial amuptation and a lymphendectomy, he started on the ip vs. Interferon trial. He completed the induction phase of 10 mg. ipi and was able to manage the side effects. In week 14, a CAT scan showed a small metastasis in his liver. He was removed from the trial and did not receive any maintenance doses. We were devastated by the news and the removal from the trial. He underwent successful microwave ablation of the lesion. Our Christmas present was a clean scan today-nine months after progession on ipi. His 3rd clean scan. Our doctor is optimistic. It was nice to hear after all the negative stuff you hear when first diagnosed.

My question is does anyone now if the maintenance doses are effective?

I think that my husband is a responder to ipi. I would like BMS to examine his blood.I think it would be provide beneficial information  to BMS. Does anyone have an idea of how to make that happen? We have Kaiser and I am basically pleased with them, but I doubt if Kaiser would point us in the direction to get this done. I don't think they would be opposed to it either.

Wishing all of you mel warriors and their families a healthy new year.

Login or register to post replies.

sweetaugust's picture
Replies 7
Last reply 12/15/2014 - 11:19am

Just giving you all another positive update.  My scans are totally stable and clean again.  I just had my 37th treatment of Keytruda yesterday.  I am now 2 years and 1 and a half month into Keytruda.  The doctors decided to just have me stay the course as things are going so well.  Merry Christmas to me!!!  :)

All my best to all of you fighting the fight.  Laurie

Login or register to post replies.

Replies by: arthurjedi007, tschmith, Anonymous, rick1981, JustMeInCA, Momrn5

With the pain in my hip, leg and shoulder I finally started taking these pain pills. They are oxycodone HCL 5 mg capsules. I had been fighting taking them but I found that worked out to taking more in a day. For now I can get by on 1 at about 10am and 1 at about 5pm. Dunno if I will need more in the future.

First and foremost I was wondering if they hinder the pd1 from working? Dad thinks they help the healing because I'm more relaxed instead of all tensed up in pain but I dunno.

I know they do something to the central nervous system and spinal cord making me feel like I have less pain. I know the common side affects they can also cause is nausea, vomiting, constipation, loss of appetite, dizziness, headache, tiredness, dry mouth, sweating, itching. When I was taking 2 at a dose so about 4 a day I noticed I went into withdrawal if I didn't take another within about 20 hours. I would feel achy but about 10 minutes after taking just one all the achy feeling went away so at least I think that was withdrawal. Since I'm taking them regular now I don't have that.

So I guess my main concern is they don't hinder the pd1 from working. I'm trying to get off them. Thanks to the radiation I think I can put up with the pain in the hip and leg but the shoulder even with heating pads and ice packs is just too much for me anymore without these pain pills. Hopefully I can get the shoulder treated sometime in the future too but I think I'm going to be on them long term so I wonder what they are doing to me. A few months ago my doc mentioned I was doing good and one of the things he mentioned why is because I wasn't taking pain pills. So I'm really wondering about these pills.

Thanks.

Artie

 

 

Login or register to post replies.

deardad's picture
Replies 11
Last reply 12/14/2014 - 5:13am

Hi this sounds a bit far fetched and I am sceptical, but I'm just wondering whether there is any substance or medical research related to the theory of ingesting baking soda on a weekly basis to decrease the acidity levels that is required for cancer to spread?

Has anyone tried this?

Nahmi from Melbourne

Login or register to post replies.

5dives's picture
Replies 9
Last reply 12/13/2014 - 7:07pm

Hello all, 

Let's go ahead and agree that anxiety comes along with melanoma, okay? 

I'm a (barely) 3b who is on a staggered 3mo rotation with oncologist and derm. I'll basically be seeing somebody every six weeks for the forseeable future. 

Still, some things worry me. I don't like to "bother" my docs, but I find it difficult to navigate things that *might* be indicators of a greater problem / recurrence. For instance, a questionable spot or a new pain. 

Is 6 weeks too long to sit on a new problem? Thoughts? 

Thank you, 

Elaine

http://melanomadame.blogspot.com/

Login or register to post replies.

eturner82's picture
Replies 9
Last reply 12/13/2014 - 10:14am
Replies by: Ed Williams, kylez, BrianP, eturner82, arthurjedi007, BP, Anonymous

Hi guys I'm in need of any and all advice, My husband just finished Yervoy and had scans 4 weeks out.... Dr meet with us and stated no new bone growth and we would rescan in 3 months. Great news I know!! the problem is yesterday dr called and said he had pulled the scan to tell us before he had read the report that came with it. He said the CT report that I would be reading in my husbands mychart was going to be very concerning to me as it would read that a lung nodule had increased in size by 1mm but that he had looked and looked at it and saw no enlargement at all.I was ok with this news knowing things get bigger before smaller with ipi, dr said trust him and continue with 3 month plan. I then got on his mychart to look at the repost myself it states........ three 3mm nodules increased to 4mm and one 4mm to 5mm.... NEW 6mm pulmonary nodule NEW 5MM pulmonary ( all in  middle lobe)also a NEW 9MM nodule within the upper lobe. New thicking at the suture line at right middle lobe resection area concerning for recurrent disease. Also New destructive osseous lesion of the 5th right rib and 4th and 6th  left rib. Also many lymph nodes in the chest have enlarged. I'm very confused as to why the doctor failed to say anything about the new growths. I am VERY  upset at this point and have no clue what to do... 3 months seems a really long time to go between scan..... up to this point bone mets in spine and hips was our major problem. So if anyone has any advice please give it.

Emily

Login or register to post replies.

Kmiles's picture
Replies 28
Last reply 12/12/2014 - 9:24pm

Hey guys,

I'm trying to plan for 2015 and the upcoming interferon one month IV followed by the 11 months of injections.  I know that no two people are alike but I'm trying to figure out working, family trips and just life in general. 

Were you able to work during the month of daily IV?  What about during the injections phase?  We have a multi family Disney trip planned... I'm trying to figure out if that is possible or not?  Hubby needs a knee replacement that was planned for February.  I want him to go ahead and do it so we can take care of each other together.  He wants to postpone it.  

One more, one more question.  Would you suggest a port?  My gut is saying yes to the port.  What is your thoughts?  

Can someone loan me their crystal ball??? I love to plan everything in my life... I'm thinking this is not for me to plan!  

Login or register to post replies.

_Paul_'s picture
Replies 9
Last reply 12/12/2014 - 6:27pm

I started ipion 9/24 and was scheduled for my last infusion on 11/26. My onc suggested to skip the last one as my pituitary more than doubled in size and I am now on prednisone and testosterone as a result. My next PET/CT scans are not scheduled until end of January and I can feel change occurring in my abdomen (it feels like a new tumor is growing on my left side under my rib cage). I don't want to wait that long since according to the onc the conventional outlook after stage IV diagnosis is less than 1 year, and it has already been three months since I was restaged. The way I look at it is if the ipi failed, then I have used up 3 of those months. I know it takes time for ipi to work but if there are new tumors or a lot of growth I am hoping to get on Keytruda sooner rather than later.

My onc is going to coordinate with my clinical trial Dr. (I am on a trial that combines ipi and stereotactic radiation of one tumor) so see about doing just a CT earlier.

So let's say I end up on the Keytruda. From what I have been reading Keytruda is slow too, but maybe not as slow as ipi. When do you decide whether its working or not? How long does one wait? I know these are subjective questions, and individual reactions are all different, but there is so much experience here on this board.

In the meantime, my sister who is a GP suggested I investigate palliative care while I am still in good shape. So I met with the folks at SCCA in Seattle and while it was a difficult conversation, I am away feeling good about their ability to manage pain should treatment fail. The nurse practioner I spoke too promised me that they could prevent a horrible agonizing death. Of course I am hoping to avoid dying any time soon, but it is comforting not to have to fear a bad outcome!

Thanks! - Paul.

Login or register to post replies.

Pages