Sub-Q’s/Fever/Aches

Sandy,

I hope you know that you remain in my thoughts and prayers.  I hope, too, that your surgery can be done on Tuesday (i hope you are already penciled in on the schedule).  I don't quite understand why they don't think the surgery will relieve your symptoms,  Yes, of course, you will have post-operative pain but other than that, I don't get it.

I'm going to think only positive thoughts.  And, I agree, Amy is so amazing.

Know that we are here for you.  I'd want to know the CT results but of course, that's a personal choice.  

(((Sandy)))

Stay Strong
Kathie

Sandy,

I hope you know that you remain in my thoughts and prayers.  I hope, too, that your surgery can be done on Tuesday (i hope you are already penciled in on the schedule).  I don't quite understand why they don't think the surgery will relieve your symptoms,  Yes, of course, you will have post-operative pain but other than that, I don't get it.

I'm going to think only positive thoughts.  And, I agree, Amy is so amazing.

Know that we are here for you.  I'd want to know the CT results but of course, that's a personal choice.  

(((Sandy)))

Stay Strong
Kathie

Hi Sandy.   I don't have advice…but I want you to know you are in my prayers.  I wish you a peaceful and informative CT Scan tomorrow.  (I always place myself on a cruise ship while my scans happen!  It keeps me calm.)  I want to know the results and not feel like I'm in the dark, but do whatever brings you calm.  Keep us informed.  I hope you are feeling better very soon.  Prayers go with you into your testing and surgery.  Beth 3/B

Hi Sandy.   I don't have advice…but I want you to know you are in my prayers.  I wish you a peaceful and informative CT Scan tomorrow.  (I always place myself on a cruise ship while my scans happen!  It keeps me calm.)  I want to know the results and not feel like I'm in the dark, but do whatever brings you calm.  Keep us informed.  I hope you are feeling better very soon.  Prayers go with you into your testing and surgery.  Beth 3/B

Sandy,

Healing thoughts and prayers going out your way.  Good luck with the Surgery.  I hope it helps.

I know what you are going through with the subq's.  Mine started popping up about 1 month ago.  My onc said they were not too bad and that some people had golf ball and larger subq.  I guess that was somewhat good news since mind are not that big, yet/.  But it is still hard to see new ones pop up overnight and other ones get bigger.

I am scheduled to start the BRAF treatment on November 1.  I hope it helps and if and when it stops working that they do not come back with a vengeance, more like a whimper.  But none of can control that.  We just have to try to remain strong in the fight against this beast and hope that the current treatment or the one after that will offer some relief or NED.

I ran into someone a few weeks ago at Will's funeral who was diagnosed stage IV a few years ago.  She had lots of internal mel in many organs.  She did all of the standard chemo, ipi and other treatments.  The doctors were going to do surgery but her internal organs were too covered for them to operate.  She went through one more round of Ipi and had all of the published side effects and then some.  Long story short, she is now NED for several years.  There are quite a few people on this board who are stage IV and are NED so I am hoping to be able to join that club one of these days.

Good luck.

Bill

Sandy,

Healing thoughts and prayers going out your way.  Good luck with the Surgery.  I hope it helps.

I know what you are going through with the subq's.  Mine started popping up about 1 month ago.  My onc said they were not too bad and that some people had golf ball and larger subq.  I guess that was somewhat good news since mind are not that big, yet/.  But it is still hard to see new ones pop up overnight and other ones get bigger.

I am scheduled to start the BRAF treatment on November 1.  I hope it helps and if and when it stops working that they do not come back with a vengeance, more like a whimper.  But none of can control that.  We just have to try to remain strong in the fight against this beast and hope that the current treatment or the one after that will offer some relief or NED.

I ran into someone a few weeks ago at Will's funeral who was diagnosed stage IV a few years ago.  She had lots of internal mel in many organs.  She did all of the standard chemo, ipi and other treatments.  The doctors were going to do surgery but her internal organs were too covered for them to operate.  She went through one more round of Ipi and had all of the published side effects and then some.  Long story short, she is now NED for several years.  There are quite a few people on this board who are stage IV and are NED so I am hoping to be able to join that club one of these days.

Good luck.

Bill

My dear Sandy,

I totally understand how difficult it is to be in Limbo like this. Just because you're getting a lot of sub-qs doesn't necessarily mean the same is happening in your organs. And even if you have to wait till Oct 27 for surgery, that's only a week away, and not much growth will happen in a week. But I do hope you can get surgery sooner, if only to give you peace of mind. Before I started Ipi last month, I had expected to start it in July, but one delay led to another, so I ended up waiting almost 3 months. I know it's weighing heavy on your mind, but you have to try to keep thinking positive thoughts. As for your low hemoglobin, mine was at 7.3, and after a transfusion of 2 units, it went back up to 11.2. But to maintain it, my Dr put me on an iron supplement, Ferrous Glucomate, and my hemoglobin has been fine ever since, as well as my energy level. Are you taking an iron supplement? If not, maybe you should ask for it. I agree that Ipi may be ill-advised given your intestinal issues, but Temodar is a very tolerable treatment. Of course, I'm sending prayers and lots of Newfie good luck, and look forward to your good news updates.

Hugs

Sharyn

Stage IV

WLE, SNB, ILP, LND, PV-10, Hysterectomy, GM-CSF, WBR, Temodar, BRAF negative, SRS Mastectomy, Ipi

My dear Sandy,

I totally understand how difficult it is to be in Limbo like this. Just because you're getting a lot of sub-qs doesn't necessarily mean the same is happening in your organs. And even if you have to wait till Oct 27 for surgery, that's only a week away, and not much growth will happen in a week. But I do hope you can get surgery sooner, if only to give you peace of mind. Before I started Ipi last month, I had expected to start it in July, but one delay led to another, so I ended up waiting almost 3 months. I know it's weighing heavy on your mind, but you have to try to keep thinking positive thoughts. As for your low hemoglobin, mine was at 7.3, and after a transfusion of 2 units, it went back up to 11.2. But to maintain it, my Dr put me on an iron supplement, Ferrous Glucomate, and my hemoglobin has been fine ever since, as well as my energy level. Are you taking an iron supplement? If not, maybe you should ask for it. I agree that Ipi may be ill-advised given your intestinal issues, but Temodar is a very tolerable treatment. Of course, I'm sending prayers and lots of Newfie good luck, and look forward to your good news updates.

Hugs

Sharyn

Stage IV

WLE, SNB, ILP, LND, PV-10, Hysterectomy, GM-CSF, WBR, Temodar, BRAF negative, SRS Mastectomy, Ipi

Hi Sandy

i am hoping you are BRAF positive it seems to get almost immediate results in some.  When you are again stable or improving then Ippi sounds logical. I am sending you lots of positive energy.

best wishes

James

Hi Sandy

i am hoping you are BRAF positive it seems to get almost immediate results in some.  When you are again stable or improving then Ippi sounds logical. I am sending you lots of positive energy.

best wishes

James

Hi Sandy,

First of all, I'm so sorry you're going through all this and you are in my thoughts and prayers!   Secondly, I'm with Kathie on this as I don't know why they would think the surgery wouldn't offer some relief but no matter what, it can't come soon enough.

Keeping my fingers crossed that it will happen asap so you can get on top of this.  Definately keep your mind and heart open to all the options – and while I know there are stories about the the melanoma coming back aggressively after Braf treatments, there are good new scenarios out there too so if you are positive for the mutation, it's something to think about.

We are all supporting you and sending lots of love and hugs to you during this challenging time!!

Mary

Hi Sandy,

First of all, I'm so sorry you're going through all this and you are in my thoughts and prayers!   Secondly, I'm with Kathie on this as I don't know why they would think the surgery wouldn't offer some relief but no matter what, it can't come soon enough.

Keeping my fingers crossed that it will happen asap so you can get on top of this.  Definately keep your mind and heart open to all the options – and while I know there are stories about the the melanoma coming back aggressively after Braf treatments, there are good new scenarios out there too so if you are positive for the mutation, it's something to think about.

We are all supporting you and sending lots of love and hugs to you during this challenging time!!

Mary

Hi Sandy,

 I don't have any advice other than going on Ipi. You are in my thoughts and prayers. Write me anytime.

 God Bless, my friend,

 Jim M.

Hi Sandy,

 I don't have any advice other than going on Ipi. You are in my thoughts and prayers. Write me anytime.

 God Bless, my friend,

 Jim M.