More No News…   March 28th, 2012

From Linda

I offered to write the blog entry as Jake is feeling quite fatigued from his ipi infusion yesterday. We both thought getting a quick note out now would relieve any anxiety out there and take the stress off Jake to get out another blog entry.

On Monday, Jake had a follow-up appointment with Dr. Kim at Mass. Eye and Ear to take another look at the spot on the retina of his right eye. We are happy to report that absolutely no changes per the doctor and therefore she confirms her previous suspicion that it is just a nevi and not related in any way to the melanoma. Yeah! Next appointment in six months.

On Tuesday, we had a very early appointment, 8:30am, with Dr. Sullivan as the ¬†usual prelude to the ipi infusion. We had a bit of difficulty getting Jake’s IV put in at the same time as his bloodwork was drawn but it all worked out in the end after a few extra trips in the elevator to get the right person to do it. Dr. Sullivan thought Jake’s palpable tumor seemed a bit spongy which might or might not be a good sign. We can only wait and see how that goes.

Dr. Sullivan also reviewed the results of the brain MRI from last week. He indicated that the inflammation was reduced since the last scan (just prior to his hospital stay) with most mets appearing to be unchanged (we were not expecting any changes). He was going to check with Jake’s other doctors but at this point, he thinks the Steriod should continue at its current level. Jake appears to be making progress with his eating and recovery which he felt was a positive.

Jake is now scheduled for a neck to knee PET/CT scan on April 18th, followed by a meeting with Dr. Flaherty on April 23rd. This scan is the typical follow up for the 4 dose ipi treatment. Dr. Sullivan indicated that we may see no changes on the scans (or even a bit worse) compared to before treatment as it may be too early for results. If this is the case, we will need to wait another 6 weeks (with no more infusions or specific treatments) for another follow-up scan which puts us into the beginning of June.

As I mentioned at the start, Jake is feeling quite tired but suffering no major side effects from the ipi so we are glad about that. We are giving him lots of time to rest as well as trying to keep his food intake up. Of course, it doesn’t help that we are having typical March weather in Boston this week, so I drove Jake to his appointments rather than walking in the cold, windy air.

So once again, no news is good news. Plans continue for our move to Chester, NH in mid-April.

 

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17 Responses

March 28th, 2012 at 23:39
elaine sculley Says:

hugs coming ur way and fantastic vibes

March 29th, 2012 at 00:17
Barbara Leary Says:

Thinking of you often, thank you for the update Linda. Lots of hugs and love, Barbara

March 29th, 2012 at 06:08
Denise & Teddy Says:

Thank you, and .. more hugs

March 29th, 2012 at 08:05
hannah Says:

Thanks for the news. Positive energy for all coming your way… hugs..

March 29th, 2012 at 08:28
Tish Says:

It’s a shame that you’ve got two Boston appointments shortly after the 13 April move, but what a lot of good news otherwise. Thanks so much for the update, Linda. Hugs and love to you all!
Tish

March 29th, 2012 at 12:56
Kelly Baum Says:

Thank you, Linda, for the update. I think of you all every single day. Love you much!

March 29th, 2012 at 14:47
Kitty Says:

Thank you for this update. You truly are an amazing and inspiring woman, Linda!

Much love,
Kitty

March 30th, 2012 at 02:04
Bud Smith Says:

Thanks for the update, Linda. Give my love to Jake!

March 30th, 2012 at 09:51
dara Says:

Thanks for the update! Thinking of all of you and sending healing energy and love. Spongy is good!

April 6th, 2012 at 17:41
Cynde Says:

Linda,

Thanks for the updates. I’ve been wondering what the brain scans had shown. Please give Jake gentle hugs, and you and the kids hugs from me. I’ll see you on the 13th for in person hugs and my moving shoes on!

Hugs and Love,

Cynde

April 7th, 2012 at 01:39
Don Says:

Hi Jake, I hope you are feeling well. My name is Don and I have been following your story. I was diagnosed with stage IV Melanoma in May 2011 (Brain and Lung mets). I had whole brain radiation June / July and started Yervoy June 2011 with my last infusion in September. As of March I had no new mets and brain scans are clean. I am trying to get the lung mets under control. I am wishing you and your family the best….Fight on!
Cheers,
Don

April 9th, 2012 at 17:11
Cynde Says:

Don, Here’s a few hugs for you too! To NED (no evidence of disease).

Cynde

April 11th, 2012 at 08:37
Pat and Mary Says:

thanks for the update linda. mary and i are thinking of all of you and you’re all in our prayers. one more bike ride past your house till we head back to the states.

April 15th, 2012 at 03:38
Roy Wickham Says:

Continued healing vibes & thoughts from across the pond in Germany.

to NED!!

April 21st, 2012 at 23:25
Laura R Says:

Warm hugs and warmer still, heartfelt thoughts of strength and positivity sent your way. Thinking of you all,

Laura R.

April 23rd, 2012 at 13:20
judy Says:

Hi Jake, following your journey,My husband was diagnosed with stage iv melanoma metastatic lung and liver mets. we have just been removed from a trial drug of zalboraf due to side effects, we are now looking in the direction of appling for trial of yervoy, we are very concerned about the side effects again in this drug. I am following your journey and others for support that we are not alone. I wish you all the very best. judy

April 23rd, 2012 at 16:34
Jamie Says:

Hi Jake and Linda! I hope your appointment went well today and that you received good scan results. Thinking of you and sending love!