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We're lucky to be on the Hodge's forum. This is the best post I've read a few days ago:


Update: How do you know that you haven’t relapsed?
Note: This applies to classical Hodgkin’s, not LPHD.

This is a new, updated post of my previous post, formatted for the new site and a few fixes. I hope you find this helpful.

To those who have recently finished treatment:
Trust that your treatment was right and that you’ll be one of the vast majority of people that are cured the first time. Of course, there are no guarantees in this cancer world, but now it’s time to get on with life and not think about this all the time. If this forum makes you too anxious, take a break and read no further!

If you’re concerned about a relapse, you have the right to get answers to your questions. Ask your doctor for a complete and detailed explanation of why (symptom or scan) is something to worry about or not to worry about. Very often, an oncologist will tell us that things are fine, but without a detailed explanation, we feel unsure of their reassurance. Oncologists seem to be particularly busy but don’t let them run out of the room until you have the information you need and don’t be shy about calling or emailing later if you still have questions.

In General
The majority of people who are treated for Hodgkin’s are cured the first time.

The chance of a relapse is very remote, especially for those with early-stage disease.

Relapses are usually very obvious and not a subtle change on a scan or a flu-like feeling for a few days. Each and every one of Adrienne’s relapses included multiple nodes over 2 cm (and as big as 5 cm) that were strongly positive on PET scans, with SUVs ranging from 7 to 28. This is very typical.

Scans
It is critical that you have a radiologist that has experience with lymphoma. It's preferable to have scans on the same machine at the same institution with the same radiologists. That way, you can be sure that they're comparing the same things and are familiar with the clinical picture of lymphoma relapses. Keep in mind that CT scans take slices every 5 mm so a change of 1-3 mm is probably due to a different slice and doesn't represent a real change. A relapse would likely reflect multiple enlarged nodes on CT (over 1.5-2 cm) and would have significant uptake on the PET scan (at least 5 or 6 or strongly positive). A concerning node would reflect both uptake on a PET scan and enlarged nodes on a CT. The beauty of the PET/CT is that they can easily line up the nodes.

If you have only CTs, if it isn’t growing from one scan to the next, you can be pretty sure it isn't cancer, even if a node is slightly enlarged. That's why it's important to have a good radiologist who will compare each scan to the previous ones, looking for a change. It's the changes that are important. You will often see all kinds of things mentioned, called incidental findings. Most have nothing to do with Hodgkin’s.

PET scans are notorious for false positives. Personally, I think false positives come from radiologists who don’t know how to correctly interpret the results or who are trying to cover themselves by mentioning any and every little thing. Brown fat is not the Hodge, nor is thymic rebound. If you have uptake in the thymus and no corresponding enlargement on a CT, it’s thymic rebound and a good radiologist will know this.

If you have uptake in a node where there was no disease previously, the chance of a relapse is very slim. Very often, especially in the first year after treatment, people have minor uptake in axillary nodes, inguinal nodes, or in the neck. These are almost always caused by infection, have very low SUVs (1-5) on a PET scan, and are under 2 cm, if they’re enlarged at all.

B Symptoms
If you didn’t have B symptoms at diagnosis, it is highly unlikely that you would have B symptoms on relapse. So if you have a fever or night sweats or achy feelings for a few days, it's likely that you have a virus or other infection, not a relapse. The only exception is itching, which can occur on relapse in people who didn't have this symptom to begin with (see itching below).

If you’ve had a clean scan within the last 90 days, whatever symptoms you have are unlikely to be B symptoms. Real B symptoms are indicative of widespread disease, and Hodgkin’s just doesn’t grow that fast. When I say widespread, I mean tumors in the 5-10 cm range and/or disease in the marrow.

Remember that people who’ve had Hodgkin’s get ordinary things: colds, flu, dry skin, etc. If you have cold or flu symptoms, you probably have a cold or flu, not a relapse of Hodgkin's. Wait at least 2 weeks of symptoms before calling your oncologist (see your PCP if you need medication for your symptoms).

Night sweats
Night sweats from Hodgkin’s are pajama- and sheet-drenching and not once in a while, but every single night or during a nap. A small night sweat here or there is much more likely to be a hormonal issue than it is Hodgkin’s, especially in women over 40. (I’m 49. I get them all the time.)

If you’re on treatment, if you’ve finished treatment within a few months, or if the weather is getting warmer, mild night sweats are normal. It turns out that 40% of people experience night sweats regularly, but clearly, 40% of people don't have lymphoma.

Fevers
Hodgkin's fevers are typically daily, often at the same time each day, if not constant, and are low grade, in the 99-101 range. Higher fevers are indicative of infection. Try alternating Tylenol and Ibuprofen every 4-6 hours, which will be effective if you have an infection. If the fevers persist beyond 2 weeks, try an Aleve/Naproxen each morning, and if this resolves the fevers, a relapse is more likely.

Weight loss/gain
You can expect to lose some of the weight gained on steroids within 6 months of coming off treatment. (I know, I know, sometimes people can’t lose the weight.) You only need to worry about weight loss if it’s more than 10% without trying and in excess of the weight you gained on treatment. Weight gain is never an issue.

Itching
The Hodge itch is a deep itch that you can’t scratch away. If you didn’t have the Hodge itch before diagnosis, it’s unlikely that any itching after treatment is due to a recurrence. There are a million things that cause itching and don’t forget that chemo dries out skin and radiation damages it, both of which can lead to itching.

Blood Work
There is little in blood work that would point to a relapse without other symptoms. You should be getting regular checkups (usually every 3-6 months) with routine bloodwork. The major purpose is to make sure your counts are returning to normal after therapy and most people's counts return to normal in 3-6 months. Sometimes it takes longer, especially in slightly older patients, but there is still no cause for concern.

There are a number of tests that look at inflammation: ESR, LDH, CRP. None of these are specific to lymphoma and are more commonly used with autoimmune diseases. If you have a cold or flu, these numbers will rise. Your doctor should only become concerned if any of these numbers is highly elevated (2-5 times normal). Keep in mind that "normal" is a reference range for the population at large and a number outside the reference range doesn't automatically signal a problem. I'm most familiar with ESR and, without symptoms, a doctor should be concerned if this number is over 90.

Why Watch and Wait?
The reason to wait is because almost always, any concerning symptoms or an abnormality on a scan go away. Why? Because they aren’t cancer. The fact is, rarely does a watch and wait situation result in a relapse. Watch and wait is a very accepted, normal practice in the treatment of lymphomas. This is another reason to have a good, experienced radiologist, so you'll know if there's a concern or not.

If you don’t trust your doctor when he/she says you should watch and wait, then this is someone you don’t trust and it’s time to get a second opinion.

If it does turn out to be a relapse, a few months of watching and waiting isn’t long enough for the Hodge to get out of control and it definitely won’t affect your prognosis or future treatment.

If you’re anxious about waiting, ask for another scan in two months rather than waiting three (if your insurance doesn’t give you a hard time).

Biopsy
If your doctor suspects a relapse, they'll order a biopsy immediately and won’t recommend a watch and wait. Keep in mind that a biopsy can still be a normal, reactive node. I've seen plenty of unnecessary biopsies prompted by a minor change on a scan noted by an inexperienced radiologist and/or an oncologist that isn't a lymphoma specialist and that doesn't recognize the clinical features of a relapse. (Do you see a trend here?)

Surgeons don’t want to go rooting around your body trying to find something to biopsy. It’s hard enough as it is to find something that’s 1-2 cm, even with a scan as guidance. No matter how close to the surface something is, it’s still surgery and has risks. If your doctor doesn’t want to do a biopsy, it’s because the invasiveness outweighs the benefit.

There are other ways to get reassurance besides a biopsy of something questionable, like getting a second opinion on your scan from another institution.

Final Thoughts
The purpose of this post is to to make you worry less, not more. You’ve been through enough. So enjoy being disease free!

Thanks alisonh!

9#11

I had to re-stitch my PICC line AGAIN.
3rd time okay. *annoyed

这几天，我好像养成了暴饮暴食的习惯。可能是我贪吃，不过也常常有一把声音告诉我，就吃吧说不定没有下次了。

这样的情况总在化疗前几天发生，然后化疗后就不吃东西，接下来开始吃一点，然后又来狂吃。我想，心里有点不平衡。

我认识了一名在巴西的女孩子，她的情况和我相似，就连我们化疗的日子、进度都只差几天。但是，她正在念大三，她竟然还上学。忽然，我觉得自己简直是懒透了。和她通信，我们能聊关于头发、化妆、学业等，感觉很舒畅。只是，她感觉上比我坚强许多。

我一直不想承认的事好像真的发生了。我的记忆变差了，原来许多病患都会这样，他们说是化疗的药物。叹，我已经不是很聪明了，连记忆也烂，这叫人能有什么信心。

9#9

仙女棒抑或蜡烛？

疾逝。痛快。
漫漫。煎熬。

9#4

这一次化疗，不知道为什么，我很难过在病床上哭了起来。我很想回家，就不要再化疗了。那种放弃的念头竟然在这个时候出现。妈妈吓到了，叫我别哭，然后就开始狂吐。

好了，再想我可能会在电脑前吐起来。

这一次化疗之前，馨滢放了两天假，连续两个早上和我在公园散步。我们从8点走到930，然后到超级市场买点菜，午餐煮来吃。馨滢开心得说好像回到大学日子放假的时光。是啊，虽然我们不同校，放假时长会晨运。现在我无法跑步，所以就散步。

海风、阳光很温和。

我们聊起浮潜的经历。我回味无穷呢。我想明年健康允许，要再潜多几次，那沙滩海水太诱人了。我们的两顿午餐：

第一个下午，我们吃了Assam鱼和空心菜。

隔天，包起饺子来！

生病的这些日子，其实总有一段时间不想吃东西，可是我知道没有进食，身体没有力气抗战。有食欲时，我都尽量吃，虽然还是怕胖，但人生这么短也这么脆弱，少穿几件漂亮的裙子也就算了。我还是比较肯为食物而牺牲。

在lymphoma forum上认识了一位康复了的病友，他是新加坡人不过移居伦敦。看了他的blog，有一则贴上了这个图像，他说他想象癌细胞在身体里瓦解的样子：

我觉得蛮好笑的。

8#14

Linda过世了。

她是我在住院第一次化疗时的邻居。她在我旁边，是个开朗的女子。虽然是第四期淋巴癌，但她比任何人还要乐观、坚强。

每天早上醒来，我都会听到她打电话回家，嘱咐十二岁的儿子吃早餐，别上学迟到。化疗时，我都没有吃东西，可她总是将香蕉、饼干递给我。我们在住院的时候，聊了许多，她教我要如何改变化疗期间的生活起居。她说要多喝水，要我和她一起喝。

Linda的妈妈常煮很多食物过来，而且阿姨都会分给我。可是，我都吃不下。阿姨开了摊西餐档口，一直叫我去捧场。出院后，我们时不时会打电话聊天，总在电话背景听到阿姨叫我去他们家吃饭。可我始终没有去。

在我脱发的时期，我很沮丧。她叫我妹妹安慰我，也在电话里安慰我。她说，脱发不要紧，健康就好，然后叫我要吃东西，才有力。她的声音很好听，是半夜里收音机那种很宁神的声音。

她是我这癌症路上的老师。

刚才打电话过去时，她的姐姐接，听到我叫Linda的名字，嘀咕了一下便哭了起来。后来，Linda的丈夫接过，告诉了我这个噩耗。我不知道要怎么反应，我一直说对不起，他还关心起我的情况。

收线后，我呆了呆，便大哭起来。
九月三十，她离开了，我连再见都没法说一声。

当我的一切似乎开始好起来，她的离去提醒着我，癌症是致命的。

我担心她的儿子。Linda曾告诉我，这个小家伙很内向，不懂得表达对妈妈的爱，还担心小六会考粗心大意。他一定很痛苦。

我不知道该不该帮他们，能不能帮。如果可以，我想和她的儿子交朋友。
告诉他，妈妈有多坚强。

8#11 Bs and Os

昨天，贴心的大伙儿也做了一些点心来探望我。大学里，除了世明和沁筠，下来常混在一起的就是wind sym的trombonists了。当然其中有海星、Meridian的学长，大家终究在大学一起玩trombone啊。

可是，大学才认识的其他trombonists，怎么说也有4年多了。
哎，都是老朋友了。

昨天，大家了解了以血型来规划自己的饮食。哲光与我们分享哪些事物对哪些血型有意，说了一大串，大家都非常有兴趣。也发现，昨天在场的大家，都是B或O型的。所以，如果我们下一次见面，可以根据这样的饮食要求吃东西。

好像，大家吃羊肉最有益。所以，下一次好像是羊肉咖哩大餐。

不过，昨天真的很开心。Cedric 要耕田、锦海还下海做曲奇呢。

哲光的meat balls 和sautee mushrooms。

松露油、意大利带回来的盐巴，都用了上等食材呢

山莓。忘了还有葡萄。Cedric说都是他自家后花园种的。

 Jenny烤了很多muffins！

有苹果和葡萄口味，我可以吃！

 Daniel很早就离开，可是他还是做了很多东西来。他烤了鸡翼，还有曲奇。

非常有心的锦海，第一次做曲奇，惨遭Daniel 妈妈的曲奇打败。虽败犹荣啦，他毕竟是第一次，而且还能吃，只是味道和火候可以再好。稍微软了一点，所以我们将Subway奖项颁给他，Daniel妈妈的则颁Famous Amos。

明穗特地买了上等大红袍。我的天啊，很贵的啊。大家泡来喝，不错，我们这群B&O从之前常喝酒，到昨天改喝茶，而且大家对茶的了解很不错哦。可怜的Mich得加班，来迟了，但还是买来了海绵蛋糕！

我们喜欢喝酒，每一个都能喝。喝了4年，没有醉过。
很有幸认识，能陪我喝茶又喝酒的他们。

8#8

Auspicious 8s.

没有心肺衰竭！！！
肺感染而以，抗生素应该就够了。

今天是过了五个月没开车，首次再坐在驾驶盘前面。还好没有生疏，爸妈还很担心我一个人开呢。刚才的晚上，我们回到了East Point Starbucks。大学时期的我们常在哪里讨论功课、聊天、倒数圣诞节（我忽然记得世明说，倒数时店员会不会用蛋糕来砸我们）。能够和世明沁筠再一次回到这个地方，这样聊天，我感觉好正常啊。

好像什么都没发生过一样。

虽然时间有点短，但是还是很开心。能和这两位朋友聊天是一种精神上的享受，玩笑只有自己懂，可是内容却是充满内涵、深度、文化的。要是在古代，我们就是那些很穷的读书人，在世明的陋室聊天喝茶。不过，外头种满了漂亮的花、结着丰硕的果实。沁筠可能讲学讲到给人赶出来，世明打破了对读书人五谷不分的偏见，种起稻米。我可能写了一堆文章却卖不出去，当成烧饭的柴火。

我们可能会到京城游玩，盘缠少得可怜。可是，却用尽身上的银两，买了一匹驴车，还有很多卷的书。再花光剩下的钱买了小笼包，在店家外分着吃。当然，那时的我们才不会爬什么长城，现在亦是。

坐在世明屋外的池边喝着最顶级的碧螺春，我们谈论政治与社会衰败。我们可能会感叹周王朝的兴旺，如今坚守道德教育的我们，感叹道德在昏庸君主的管制下每况愈下。然后，我和世明佩服沁筠这么用心讲学。

同时，也希望Siri听得懂中文。

8#7

我的眉毛和眼睫毛剩下不多了。
要黏假的眼睫毛都不可以，对吧？

哈哈。I was telling Kai Ling, I look like Lord Voldemont now. -_-!

8#6

化疗还有4次。

这一次化疗过后，第三天我无法正常呼吸。感觉像是跑完了步，久久无法喘过气来。呼吸道受阻和喘不过气的分别，如果你患有哮喘就会知道差别在哪儿。非常不巧，yours truly小时候就患有哮喘，大概中学时期就不再发作。或许是吹trombone多少有点锻炼。我这种情况大多医生都说是childhood asthma并无大碍。毕竟，家里有eczema的基因，而哮喘和eczema是有关系的。

重点是这一喘持续了一整天。

随后，看了医生，她觉得不妙因为我一个月前就有胸口不适的症状。所以她让我做了CT chest High-resolution、肺功能测试、心脏超声波扫描。昨天，在扫描时医护人员就说，我肺积水。

化疗药物会导致心、肺、肝的损坏，所以一开始在化疗前医生就告诉我了。然而，许多人的内脏都不会衰竭，我有够衰。现在，医生要查出到底是心脏还是肺出现问题，星期五我们再做商讨，是否要减轻化疗的药物。

在家里，只能坐着或慢慢地走来走去而已。
要好好弹一支Asturias都这么难！*生气！

7#11 Living and Surviving

Charmaine has gone home to live with her family, for the remaining time she has. I was actually quite affected by the palliative measures the hospital took. Reading about so many cancer survivor's story, I imagine Charmaine will eventually be one of them. These stories are so many that sometimes, you start to believe it's going to happen on every single cancer patient. But, hey, people still die from cancer.

Every time I visit her blog, I really prayed that her condition is improving as I scroll down the page. Sometimes, when there's improvement, I'll imagine we will all be the strong cancer survivor who has a bright future ahead. She is really a cute girl. But, when I read post that says that her condition has worsen, I'll get depressed for awhile and totally hate cancer, hate everything that makes me sick.

A few weeks ago, Cyn Mommy decided to stop chemo for Charmaine. I don't how I should react, it was a really mixed feelings. I felt relieved for Charmaine as chemo really sucks, but at the same time had this tinge of sadness because chemo on Charmaine must have hurt Cyn Mommy so much that she decided to stop it.

And now they are preparing for her departure. After 2.5 years.

I do not know them personally, but reading about Charmaine and Cyn Mommy, I could really understand how they felt. I've never posted a comment or leave a msg for them, because Cyn Mommy really need more peace and rest and not entertaining people's messages.

But, like what Cyn Mommy says, I'll still believe in miracles.

未知生，焉知死。
或许，我和Charmaine大概知道“生”是怎么一回事了。

*****

近来，其实身体开始出现一些肺功能减退的症状。I'm kind of prepared for a lung damage verdict. 星期一做了肺功能检测，但愿我的肺还没有坏掉。看了一些资料，发现化疗药物中ABVD中的“B”会导致肺衰竭。

另外，胸口其实会痛，不知道是肺还是心脏有问题。因为化疗药物也会使我患上心脏疾病。所以，医生说如果胸口的痛楚没有减轻，我就要看心脏科医生了。

前几天我在想，夺我命者，或许不是癌症而是这些药物的副作用。有些人以为，化疗结束这一切就会消失。对不起，除了肺和心脏功能减退或衰竭，我也面临肝硬化、肾疾病的危险，而且是不会在化疗结束后消失的。更不用说20年后所可能出现的第二次癌症。

然后，许多人就会说，都是可能而已，不会发生。嗯，不好意思，癌症都发生了，所以我已经学会以死亡为准备。现在都出现肺有问题，不要再让我以为什么都不会发生。当初知道患上癌症的痛苦，我不想再经历一次。

我不是绝望，我还是为那些祝福与关心感到很感动。只是，有时候在告诉我一些“不会发生的啦”、“you will be fine”之类的话语时，我觉得要懂得负责任，因为事实与数据的证明就摆在眼前。我不想活在花花世界里，然后让诊断结果吓到死掉的那种人。因此大家是可以跟我谈论死亡之类的话题的。

所以，这样活着真是煎熬。

这才是我和朋友之前讨论过的“苦”。人生真的很苦。

*****

星期天，慧娟雨情恺健来看我。和他们聊天真的很开心。他们让我感觉我和这个世界还是能够接轨的。我说起一些实习的日子，好怀念。我也更了解这些朋友了。我们在学校认真了解彼此的时间很短。我能在家就会在家，不会在学校混。中文系的活动都是闪掉的。

不过，慧娟和雨情是我在中文系的第一份小组作业的组员。他们算是在中文系认识最久的朋友了。

我发现他们是如此地勇敢，来到异地念书工作。这几个总是笑嘻嘻的朋友，从不露出疲倦的样子。学业优秀，而且这么努力地为他们的生命而奋斗。就好像冰心讲的，我则是温室里的小花。或许，我话不多但我很喜欢听他们聊天。

哪天我好一点，就和雨情一起煮点东西，大家再一起喝茶聊天。

7#9 John Williams

Recently, I stopped playing the guitar for awhile. I'm not sure if i'm getting lazier each day staying at home, or trying too hard to pretend I love cooking, reading and playing guitar during this period of treatment, thus, I'm tired.

I have loads of music which I can't play in perfection, so many etudes to complete, tone to improve, fingerings to familiarise. Worse of all, I can't remember a 3 page piece at all. Call me a guitarist, man.

Maybe not just guitar, I've stopped listening to music as well. Books too, I'm reading very very very slowly. And so I wonder, how did i spend my day away when I'm home alone.

Last night, I decided to play the John William album I bought before flying to Melbourne for my grad trip. After the trip I was immediately hospitalised and everything flooded in like I was living another person's life. Then, i remembered this album.

I'm not sure if i was listening intensely, but when the CD reached tracked 2 Cavatina, I was already crying very hard. All these pieces were pieces I use to play. My all time guitar friend said the music must have touched me. Yea, I guess so. I remembered a lot of things, and I felt very bad neglecting my guitar for so long.

After this coming chemo, I'll try to play Asturias again.